Chapter 1
Introduction
Page 6. Alzheimer’s Disease International:
World Alzheimer Report 2016
1.1 Healthcare in context
Narratives and reviews of dementia care systems
have tended to emphasise social care, whether
provided by unpaid family carers, or services that
are developed to support, supplement or
substitute their core role in the journey of care.
This was the topic of the World Alzheimer Report
2013[1]. The focus is understandable in many
ways. The goal of ‘living well with dementia’ is
achieved when care is person-centred, seamless
and co-ordinated, and when the needs of people
with dementia, and their carers, are anticipated
and met in a timely fashion throughout the course
of the condition. Much remains to be done to
achieve this objective - long term care systems
around the world are too often fragmented,
unresponsive, and of inadequate quality, and
coverage of core support services is low,
particularly in less well-resourced low and
middle income countries (LMIC)[1]. There is
also a fiscal imperative; 80-85% of the global
societal costs of dementia (currently estimated to
be US$818 billion) arise from the direct costs of
social care services, and the informal unpaid
inputs of family carers[2]. In high income
countries (HIC) informal care and the direct
costs of social care (community homecare, and
residential care) make similar contributions to
total costs. In LMIC, the costs of informal care
predominate, since a structured formal social
care sector has, as yet, not been developed. Less
attention, relatively speaking, is paid to the
systems and services that deliver healthcare for
people with dementia. Currently, only 10-15%
of total societal costs arise from healthcare,
regardless of setting[2].
Healthcare costs are modest because:
1. Diagnostic coverage is low. In most HIC, only
40-50% of people living with dementia have
received a diagnosis. In LMIC there are few
available estimates, but diagnostic coverage is
unlikely to exceed 5-10% in most settings
[3–5]. Diagnostic coverage is important, since
this is the gateway to planning for, and receipt
of, health and social care services, across the
disease course. Increasing the coverage of timely
dementia diagnosis is a priority for most current
national and regional policies and plans.
2. Dementia specialist care is underdeveloped in
LMIC. There are very few geriatricians,
neurologists and psychiatrists, and few hospital
or community based services dedicated to
diagnosis and continuing care [6–8]. Coverage
of continuing care services remains low in HIC,
in part because of low diagnostic coverage, but
also because specialist services struggle to
provide continuous and responsive care to
rapidly increasing numbers of people with
dementia[9].
3. Even interventions with a strong evidence-
base (for example acetylcholinesterase inhibitors
and memantine) are not being delivered to all
who might benefit, while others have scarcely
been implemented at all (carer education,
training and support).
4. Other interventions that have been proposed
and considered in some health systems (for
example early post-diagnostic support, cognitive
stimulation, and case management/coordination)
remain thinly evidenced, particularly as regards
their cost effectiveness, and have not, as yet,
been taken to scale in most health systems.
5. There are, as yet, no treatments that alter the
course of dementia. Following on from the G7-
led Global Action on Dementia, development of
such treatments is an inter governmentally
agreed global public health priority[10]. The
distribution of health and social care costs for
dementia is strikingly different to those, for
example, of cancer care, where the aim is
remission or cure, often through the use of
expensive drugs and diagnostic technologies. In
the event that such treatments are identified for
dementia, we will need to have delivery systems
capable of providing high coverage, with equity.
The salience of healthcare to achieving better
outcomes for people living with dementia is
indicated by the results of a recent research
prioritisation exercise, led by WHO for the G7
Global Action on Dementia legacy process, eight
of the top 20 research avenues identified related
to diagnosis, or the delivery, or quality of
dementia care. Most of these research avenues
either primarily concerned healthcare services,
or involved potential inputs from healthcare
services (see Box 1.1)
1.2 Structural barriers to the delivery of
effective healthcare for older people
The Madrid International Plan of Action on Ageing
called for the elimination of social and economic
inequalities in access to healthcare and the
development of healthcare and long-term care to
meet the needs of older persons11. It is important
to acknowledge that the goal of age-appropriate
healthcare for all is far from being achieved[12].
The fitness for purpose of health services and
systems for older adults with complex,
interacting, chronic medical and social problems
remains open to question[13]. Ageist attitudes
and beliefs; that ill health is inevitable,
intervention ineffective, and improved outcomes
inherently less valuable; are widespread even
among older people and healthcare professionals
[14]. Health services are often not adequately
orientated to the assessment and management of
complex cognitive, physical and mental multi-
morbidities, and the provision of continuing
rather than curative care[13,15]. Structural
barriers to accessing healthcare include the high
cost of chronic disease care when incomes are
insecure, healthcare is financed by out of pocket
payments and insurance coverage is incomplete
[16–18].
[Box 1.1]
Dementia research priorities relevant to the
healthcare sector (WHO Research Prioritization
exercise)
• Identify clinical practice and health system
based interventions that would promote a timely
and accurate diagnosis of dementia in primary
healthcare practices. (Diagnosis)
• Evaluate the relative effectiveness and
identify the optimal models of care and
support for people with dementia and their
carers in the community (e.g. collaborative
care, integrated health and social care, case
management) across the disease course.
(Delivery of care)
• Identify strategies to anticipate and deliver
effective and cost-effective late life and
end of life care for people with dementia,
including advance care planning. (Delivery of
care)
• Determine the most effective interventions
for educating, training and supporting formal
and informal carer(s) of people with dementia.
(Quality of care)
• Determine and ensure optimal use of
psychological and pharmacological
treatments for Behavioral and Psychological
symptoms of Dementia (BPSD) to maximize
patients’ quality of life and caregiver burden
reduction. (Quality of care)
• Understand the role of assistive and
technological devices, including e-health
and mobile health technology strategies, for
people with dementia and/or their carer(s).
(Delivery of care)
• Develop and evaluate policies, investments
and plans for increasing the capacity,
knowledge, skills and interest of the health
and social care workforce in the field of
dementia. (Quality of care)
• Establish norms and standards for the
highest quality of care in residential and
nursing homes and approaches to assist
families of people with dementia to determine
the optimal time to consider placement.
(Quality of care)
1.3 Purposes of healthcare for dementia
In the USA, the Advisory Council for Alzheimer’s
Research, Care and Dementia interdisciplinary
Dementia Measures Work Group recently defined
the objectives of clinical care as:
“preserving, to the maximum possible extent,
cognitive and functional abilities, reducing the
frequency, severity, and adverse impact of
neuropsychiatric and behavioral symptoms,
sustaining the best achievable general health,
reducing risks to health and safety, and enhancing
caregiver wellbeing, skill, and comfort with
managing the patients with dementia in
partnership with health care providers.”[19]
1.4 Healthcare resources
In many high income country health systems it
is possible to discern two branches of dementia
specialist healthcare service, which have been
characterised as an ‘early intervention’ stream
(mainly outpatient memory clinics, focusing on
early differential diagnosis and early
intervention to minimise future harm, risk and
cost for the patient) and a ‘serious mental illness’
stream (co-ordinating community care in the
more advanced stages of the disease treating
severe and complex disorders with high levels
of risk and co-morbidity)[20].
There are very few comparable data available
internationally regarding the extent of specialist
healthcare resources for dementia care. This will
change, with the establishment in 2016/17 of the
WHO Global Dementia Observatory, with one
core activity being to obtain detailed information
from Ministries of Health on healthcare
resources, and coverage of services.
In the UK a national audit of memory clinic
services indicated that, in 2014 there were 222
memory clinics (one for every 3400 people with
dementia)[9]. Numbers of assessments increased
31% in one year (2013-2014), but without any
equivalent increase in resourcing or capacity.
Average waiting time for assessment and
diagnosis post assessment both increased slightly
over the same period, as did the range of waiting
times (from one week to 32 weeks). In the
Netherlands, where this process was monitored
between 1998 and 2009, the number of clinics
increased from 12 to 63, the number of new
clients seen annually has risen from 1,700 to
14,175, and the estimated proportion of all
incident cases of dementia in the Dutch
population that receive a formal diagnosis
through a memory clinic rose from 5% to 27%
[21]. Such specialist services have also begun to
be developed in low and middle income countries,
typically on western lines[22], but in a sporadic
and unplanned fashion, and with low levels of
national coverage. Thus, in India there were
estimated, in 2013, to be approximately 100
memory clinics nationally (approximately one
clinic per 37,000 people with dementia), two-
thirds supported by a pharmaceutical company
[23]. Almost all the federal government super
specialty hospitals, with neurology and
psychiatry services, had a memory clinic or
specialty clinic for people with dementia, but
with almost no clinics in other government
hospitals[23]. In China, a survey of 36 tier 3
hospitals (randomly selected from 995 nation-
wide) indicated that only one sixth had
Introduction
Page 6. Alzheimer’s Disease International:
World Alzheimer Report 2016
1.1 Healthcare in context
Narratives and reviews of dementia care systems
have tended to emphasise social care, whether
provided by unpaid family carers, or services that
are developed to support, supplement or
substitute their core role in the journey of care.
This was the topic of the World Alzheimer Report
2013[1]. The focus is understandable in many
ways. The goal of ‘living well with dementia’ is
achieved when care is person-centred, seamless
and co-ordinated, and when the needs of people
with dementia, and their carers, are anticipated
and met in a timely fashion throughout the course
of the condition. Much remains to be done to
achieve this objective - long term care systems
around the world are too often fragmented,
unresponsive, and of inadequate quality, and
coverage of core support services is low,
particularly in less well-resourced low and
middle income countries (LMIC)[1]. There is
also a fiscal imperative; 80-85% of the global
societal costs of dementia (currently estimated to
be US$818 billion) arise from the direct costs of
social care services, and the informal unpaid
inputs of family carers[2]. In high income
countries (HIC) informal care and the direct
costs of social care (community homecare, and
residential care) make similar contributions to
total costs. In LMIC, the costs of informal care
predominate, since a structured formal social
care sector has, as yet, not been developed. Less
attention, relatively speaking, is paid to the
systems and services that deliver healthcare for
people with dementia. Currently, only 10-15%
of total societal costs arise from healthcare,
regardless of setting[2].
Healthcare costs are modest because:
1. Diagnostic coverage is low. In most HIC, only
40-50% of people living with dementia have
received a diagnosis. In LMIC there are few
available estimates, but diagnostic coverage is
unlikely to exceed 5-10% in most settings
[3–5]. Diagnostic coverage is important, since
this is the gateway to planning for, and receipt
of, health and social care services, across the
disease course. Increasing the coverage of timely
dementia diagnosis is a priority for most current
national and regional policies and plans.
2. Dementia specialist care is underdeveloped in
LMIC. There are very few geriatricians,
neurologists and psychiatrists, and few hospital
or community based services dedicated to
diagnosis and continuing care [6–8]. Coverage
of continuing care services remains low in HIC,
in part because of low diagnostic coverage, but
also because specialist services struggle to
provide continuous and responsive care to
rapidly increasing numbers of people with
dementia[9].
3. Even interventions with a strong evidence-
base (for example acetylcholinesterase inhibitors
and memantine) are not being delivered to all
who might benefit, while others have scarcely
been implemented at all (carer education,
training and support).
4. Other interventions that have been proposed
and considered in some health systems (for
example early post-diagnostic support, cognitive
stimulation, and case management/coordination)
remain thinly evidenced, particularly as regards
their cost effectiveness, and have not, as yet,
been taken to scale in most health systems.
5. There are, as yet, no treatments that alter the
course of dementia. Following on from the G7-
led Global Action on Dementia, development of
such treatments is an inter governmentally
agreed global public health priority[10]. The
distribution of health and social care costs for
dementia is strikingly different to those, for
example, of cancer care, where the aim is
remission or cure, often through the use of
expensive drugs and diagnostic technologies. In
the event that such treatments are identified for
dementia, we will need to have delivery systems
capable of providing high coverage, with equity.
The salience of healthcare to achieving better
outcomes for people living with dementia is
indicated by the results of a recent research
prioritisation exercise, led by WHO for the G7
Global Action on Dementia legacy process, eight
of the top 20 research avenues identified related
to diagnosis, or the delivery, or quality of
dementia care. Most of these research avenues
either primarily concerned healthcare services,
or involved potential inputs from healthcare
services (see Box 1.1)
1.2 Structural barriers to the delivery of
effective healthcare for older people
The Madrid International Plan of Action on Ageing
called for the elimination of social and economic
inequalities in access to healthcare and the
development of healthcare and long-term care to
meet the needs of older persons11. It is important
to acknowledge that the goal of age-appropriate
healthcare for all is far from being achieved[12].
The fitness for purpose of health services and
systems for older adults with complex,
interacting, chronic medical and social problems
remains open to question[13]. Ageist attitudes
and beliefs; that ill health is inevitable,
intervention ineffective, and improved outcomes
inherently less valuable; are widespread even
among older people and healthcare professionals
[14]. Health services are often not adequately
orientated to the assessment and management of
complex cognitive, physical and mental multi-
morbidities, and the provision of continuing
rather than curative care[13,15]. Structural
barriers to accessing healthcare include the high
cost of chronic disease care when incomes are
insecure, healthcare is financed by out of pocket
payments and insurance coverage is incomplete
[16–18].
[Box 1.1]
Dementia research priorities relevant to the
healthcare sector (WHO Research Prioritization
exercise)
• Identify clinical practice and health system
based interventions that would promote a timely
and accurate diagnosis of dementia in primary
healthcare practices. (Diagnosis)
• Evaluate the relative effectiveness and
identify the optimal models of care and
support for people with dementia and their
carers in the community (e.g. collaborative
care, integrated health and social care, case
management) across the disease course.
(Delivery of care)
• Identify strategies to anticipate and deliver
effective and cost-effective late life and
end of life care for people with dementia,
including advance care planning. (Delivery of
care)
• Determine the most effective interventions
for educating, training and supporting formal
and informal carer(s) of people with dementia.
(Quality of care)
• Determine and ensure optimal use of
psychological and pharmacological
treatments for Behavioral and Psychological
symptoms of Dementia (BPSD) to maximize
patients’ quality of life and caregiver burden
reduction. (Quality of care)
• Understand the role of assistive and
technological devices, including e-health
and mobile health technology strategies, for
people with dementia and/or their carer(s).
(Delivery of care)
• Develop and evaluate policies, investments
and plans for increasing the capacity,
knowledge, skills and interest of the health
and social care workforce in the field of
dementia. (Quality of care)
• Establish norms and standards for the
highest quality of care in residential and
nursing homes and approaches to assist
families of people with dementia to determine
the optimal time to consider placement.
(Quality of care)
1.3 Purposes of healthcare for dementia
In the USA, the Advisory Council for Alzheimer’s
Research, Care and Dementia interdisciplinary
Dementia Measures Work Group recently defined
the objectives of clinical care as:
“preserving, to the maximum possible extent,
cognitive and functional abilities, reducing the
frequency, severity, and adverse impact of
neuropsychiatric and behavioral symptoms,
sustaining the best achievable general health,
reducing risks to health and safety, and enhancing
caregiver wellbeing, skill, and comfort with
managing the patients with dementia in
partnership with health care providers.”[19]
1.4 Healthcare resources
In many high income country health systems it
is possible to discern two branches of dementia
specialist healthcare service, which have been
characterised as an ‘early intervention’ stream
(mainly outpatient memory clinics, focusing on
early differential diagnosis and early
intervention to minimise future harm, risk and
cost for the patient) and a ‘serious mental illness’
stream (co-ordinating community care in the
more advanced stages of the disease treating
severe and complex disorders with high levels
of risk and co-morbidity)[20].
There are very few comparable data available
internationally regarding the extent of specialist
healthcare resources for dementia care. This will
change, with the establishment in 2016/17 of the
WHO Global Dementia Observatory, with one
core activity being to obtain detailed information
from Ministries of Health on healthcare
resources, and coverage of services.
In the UK a national audit of memory clinic
services indicated that, in 2014 there were 222
memory clinics (one for every 3400 people with
dementia)[9]. Numbers of assessments increased
31% in one year (2013-2014), but without any
equivalent increase in resourcing or capacity.
Average waiting time for assessment and
diagnosis post assessment both increased slightly
over the same period, as did the range of waiting
times (from one week to 32 weeks). In the
Netherlands, where this process was monitored
between 1998 and 2009, the number of clinics
increased from 12 to 63, the number of new
clients seen annually has risen from 1,700 to
14,175, and the estimated proportion of all
incident cases of dementia in the Dutch
population that receive a formal diagnosis
through a memory clinic rose from 5% to 27%
[21]. Such specialist services have also begun to
be developed in low and middle income countries,
typically on western lines[22], but in a sporadic
and unplanned fashion, and with low levels of
national coverage. Thus, in India there were
estimated, in 2013, to be approximately 100
memory clinics nationally (approximately one
clinic per 37,000 people with dementia), two-
thirds supported by a pharmaceutical company
[23]. Almost all the federal government super
specialty hospitals, with neurology and
psychiatry services, had a memory clinic or
specialty clinic for people with dementia, but
with almost no clinics in other government
hospitals[23]. In China, a survey of 36 tier 3
hospitals (randomly selected from 995 nation-
wide) indicated that only one sixth had
functioning memory clinic services, and that
there were only a small number of neurologists
with competencies as dementia practitioners[24].
This would suggest around 166 memory clinics
nationally, or one for every 48,000 people with
dementia. Only 0.1% of outpatients received a
diagnosis of dementia. After the institution of a
training programme memory clinic services were
introduced in all of the hospitals, and the
proportion of outpatients diagnosed increased
there were only a small number of neurologists
with competencies as dementia practitioners[24].
This would suggest around 166 memory clinics
nationally, or one for every 48,000 people with
dementia. Only 0.1% of outpatients received a
diagnosis of dementia. After the institution of a
training programme memory clinic services were
introduced in all of the hospitals, and the
proportion of outpatients diagnosed increased
fourfold, to 0.4%24. In the 30 hospitals previously
without memory clinics the proportion of out-
patients diagnosed increased from 0.03% to
0.38%. Overall, the proportion of patients
diagnosed according to standard procedures
increased from 23.1% to 97.5%. The proportion
of those diagnosed with Alzheimer’s disease
prescribed acetylcholinesterase inhibitors
patients diagnosed increased from 0.03% to
0.38%. Overall, the proportion of patients
diagnosed according to standard procedures
increased from 23.1% to 97.5%. The proportion
of those diagnosed with Alzheimer’s disease
prescribed acetylcholinesterase inhibitors
increased from 19.7% to 66.6% and receiving
memantine from 4.1% to 21.5%.
The three studies described here confirm the
general sense that:
general sense that:
1. Services in many high income countries provide
comprehensive geographic coverage, but may
struggle to meet increasing demand
2. In middle income countries, services are very
limited, and are largely restricted to tertiary care
hospitals in major population centres.
The default option, worldwide, is for healthcare
for people with dementia to be provided by
primary healthcare services. Again, we do not
know what proportion of diagnoses, and
continuing care for dementia is being provided
by primary care practitioners (PCPs). In North
America, it seems that PCPs may play an
important role, in part because of difficulties in
accessing specialist services[25–28]. For low
and middle income countries it seems likely that
for people with dementia to be provided by
primary healthcare services. Again, we do not
know what proportion of diagnoses, and
continuing care for dementia is being provided
by primary care practitioners (PCPs). In North
America, it seems that PCPs may play an
important role, in part because of difficulties in
accessing specialist services[25–28]. For low
and middle income countries it seems likely that
diagnosis in primary care is currently very
infrequent, and as such, while general healthcare
may be being provided, there would also be
almost no dementia specific structured
continuing care and support provided at this
level of the health system [29,30].
infrequent, and as such, while general healthcare
may be being provided, there would also be
almost no dementia specific structured
continuing care and support provided at this
level of the health system [29,30].
1.5 Functions and processes of healthcare for
dementia
dementia
Dementia risk reduction
Prevention is traditionally the province of
government public health and disease control
agencies. However, the healthcare sector, in
particular primary care, has an important role in
promotion, prevention and early intervention
with respect to the emerging consensus on
modifiable risk factors for dementia
(hypertension, diabetes, smoking, and
under-activity) [31,32].
government public health and disease control
agencies. However, the healthcare sector, in
particular primary care, has an important role in
promotion, prevention and early intervention
with respect to the emerging consensus on
modifiable risk factors for dementia
(hypertension, diabetes, smoking, and
under-activity) [31,32].
Detection and diagnosis
The diagnosis of dementia requires a careful
medical history and examination, cognitive
testing, and assessment of functional impairment.
Progressive dementia needs to be distinguished
from normal ageing. Differential diagnosis entails
exclusion of other possible causes of cognitive
decline (for example, delirium or depression) and
possible causes of secondary dementia need to be
identified and treated where present. Formal
diagnoses, and dementia sub-typing are often
made by specialist teams working in memory
clinics or other diagnostic services, and in some
healthcare settings access to certain dementia
drugs, services and benefits are dependent upon
medical history and examination, cognitive
testing, and assessment of functional impairment.
Progressive dementia needs to be distinguished
from normal ageing. Differential diagnosis entails
exclusion of other possible causes of cognitive
decline (for example, delirium or depression) and
possible causes of secondary dementia need to be
identified and treated where present. Formal
diagnoses, and dementia sub-typing are often
made by specialist teams working in memory
clinics or other diagnostic services, and in some
healthcare settings access to certain dementia
drugs, services and benefits are dependent upon
this. However, non-specialists, particularly in the
primary care sector have an important part to
play. While screening for dementia remains
controversial (see section 2.4), there is broad
agreement that, if appropriate, it is best
conducted in primary care[33]. In many health
systems, primary healthcare services are the
natural ‘first port of call’ for those seeking help
for a new health problem, and PCPs play an
important gate-keeper role, deciding which
patients should and should not be referred on for
specialist assessment and treatment. In a case-
note study from the UK, 96% of patients on a
primary care register with confirmed or
suspected dementia had their diagnosis first made
play. While screening for dementia remains
controversial (see section 2.4), there is broad
agreement that, if appropriate, it is best
conducted in primary care[33]. In many health
systems, primary healthcare services are the
natural ‘first port of call’ for those seeking help
for a new health problem, and PCPs play an
important gate-keeper role, deciding which
patients should and should not be referred on for
specialist assessment and treatment. In a case-
note study from the UK, 96% of patients on a
primary care register with confirmed or
suspected dementia had their diagnosis first made
in primary care, and two-thirds of those identified
in primary care were then referred immediately
for specialist attention [34].
for specialist attention [34].
Managing comorbidity (and complexity)
People with dementia are highly likely to be living
with complex multimorbidities, with both mental
and chronic physical health conditions. It is
important that these are addressed, to minimise
cognitive and functional disabilities, to prevent
and treat newly emerging behavioural symptoms,
and to optimise quality of life. This needs to be
done in a holistic manner, accounting for the
preferences of people with dementia and carers,
and with coordination to increase efficiency,
reduce burden on people with dementia, and
limit potential adverse effects.
and chronic physical health conditions. It is
important that these are addressed, to minimise
cognitive and functional disabilities, to prevent
and treat newly emerging behavioural symptoms,
and to optimise quality of life. This needs to be
done in a holistic manner, accounting for the
preferences of people with dementia and carers,
and with coordination to increase efficiency,
reduce burden on people with dementia, and
limit potential adverse effects.
Avoiding unnecessary and/or counterproductive
patterns of use of healthcare services
patterns of use of healthcare services
In many HIC settings, avoidance of hospitalisation
(particularly emergency department attendance
and non-elective admission) of people living with
dementia has become an explicit policy aim, with
recommendations to better manage admissions,
reduce length of stay, and facilitate discharge.
While the hazards of hospitalisation and the poor
outcomes achieved are increasingly understood, it
is also possible that people with dementia may be
being denied the right to receive hospital-based
medical interventions that might improve their
overall functioning and quality of life (through a
variety of mechanisms including diagnostic over
-shadowing, misperceived contraindications, and
failure to address lack of capacity to consent).
Even where hospitalizations might be better
avoided, or shortened, alternative home-based
care options (for example, ‘hospital at home’)
need to be developed, evaluated and resourced.
overall functioning and quality of life (through a
variety of mechanisms including diagnostic over
-shadowing, misperceived contraindications, and
failure to address lack of capacity to consent).
Even where hospitalizations might be better
avoided, or shortened, alternative home-based
care options (for example, ‘hospital at home’)
need to be developed, evaluated and resourced.
Interactions with social care
Health and social care assessments and
interventions should be closely aligned. Carer
demands and carer strain increase when
morbidity is under-diagnosed and under-treated
(for example pain, bowel and bladder function,
sensory impairments, and behavioural and
interventions should be closely aligned. Carer
demands and carer strain increase when
morbidity is under-diagnosed and under-treated
(for example pain, bowel and bladder function,
sensory impairments, and behavioural and
psychological symptoms). Services that
supplement or substitute for informal care (home
care, respite care, residential care) are resource-
and cost intensive, and healthcare professionals
are needed to provide input into social care needs
assessments. Post-diagnostic support, case
management, and education, and training and
support interventions for carers can bolster
informal care, reduce the need for supplementary
support and transition into care homes, prevent
consequential physical and mental health
problems, and increase the efficiency with which
supplement or substitute for informal care (home
care, respite care, residential care) are resource-
and cost intensive, and healthcare professionals
are needed to provide input into social care needs
assessments. Post-diagnostic support, case
management, and education, and training and
support interventions for carers can bolster
informal care, reduce the need for supplementary
support and transition into care homes, prevent
consequential physical and mental health
problems, and increase the efficiency with which
healthcare services are used. These are all
examples of services that fall on the cusp
between health and social care. While the
professionals who carry out and lead these
activities may be located within either the health
or social care sectors, their success will depend
examples of services that fall on the cusp
between health and social care. While the
professionals who carry out and lead these
activities may be located within either the health
or social care sectors, their success will depend
critically on the extent of intersectoral integration
and coordination.
and coordination.
1.6 Principles of healthcare for dementia
A public health approach
A public health model for dementia care
prioritises meeting population level needs, rather
than merely optimising the quality of care for the
minority who access high quality specialist care.
There is, therefore, a focus upon increasing
coverage (the proportion of those in need that
receive care), and effective coverage (the proportion of those in need whose needs are
met). Note that diagnostic coverage places a ceiling on
treatment coverage, since, without a diagnosis, it is not
possible to deliver comprehensive structured dementia
care (see Figure 1.1). Levels of treatment coverage
will therefore be lower than the levels of diagnostic
coverage provided in previous sections, since many
of those diagnosed are not in receipt of appropriate
continuing care. Levels of effective coverage will be
lower still. Increasing coverage requires promoting
demand (help-seeking) through increased awareness,
scaling up the supply of diagnostic and care services
to meet the demand, and a reduction in the barriers to
access. Aside from coverage, the success of scaling
up initiatives are conventionally judged upon the
equity with which care is delivered (equitable access
to services based only upon need), and the outcomes
achieved.
Figure 1.1
Dementia diagnostic and treatment coverage
Currently, within HIC, models of health service care for
dementia tend to be highly specialised, from diagnosis
onwards, with very little formal recognition of the role
of primary care services, or allocation of tasks to this
sector. There are many potential limitations to this
approach. It is unlikely that full coverage of services
could be attained, and efficiency has probably not
been optimised. Those who have received a diagnosis
often do not receive seamless and continuing care,
which is beyond the capacity and reach of specialist
services working in isolation. The specialist model of
dementia care does not facilitate care-coordination
for those with complex multimorbidities, which is a
core function of primary healthcare. In most LMIC, specialist services are far too under-resourced to
have the capacity to deal with current levels of need,
and demand (numbers affected) is likely to increase
more rapidly than the development of the specialist
workforce. When existing healthcare resources are
not well-matched to the local healthcare need, then
services become less accessible, and even when they
are accessible, they are less affordable. Some degree
of task-shifting to non-specialist healthcare workers
will therefore be an essential component of scaling up
services in resource-poor settings35,36. Collaborative or
shared-care models distribute tasks between primary
and secondary care services in a structured and
organized fashion.
Task-shifting
Task-shifting is defined as delegating selected tasks
to existing or new health professional cadres with
either less training or narrowly tailored training37. This
may involve shifting tasks from higher- to lower-skilled
health workers (e.g. from a neurologist specialist
doctor to a PCP), or creating new professional cadres,
whereby tasks are shifted from workers with more
general training to workers with specific training for
a particular task (e.g. from a PCP to a dementia case
manager). The two underlying assumptions are that the
unit cost of the task-shifted option is cheaper, and that
the quality of care and its outcomes are equivalent. The
less-specialised cadre are generally more numerous,
and hence have the capacity to alleviate the resource
constraints that are barriers to achieving increased
coverage. In technical terms, the primary objective
of task-shifting is to increase productive efficiency,
that is, to increase the volume of healthcare services
provided at a given quality and cost, or, alternatively,
to provide the same level of healthcare services at a
given quality, but at a lower cost37. Hence task-shifting
can be a relevant strategy for resource-limited LMIC
(with the aim of increasing coverage). Evidence from
LMIC indicates that, with adaptation and appropriate
training and supervision, it is feasible for interventions
developed to be delivered by specialist doctors to be
taken on by non-specialists (and non-doctors) without
an adverse effect on clinical outcomes37–39. Although
this literature is growing, as the authors of one review
point out the evidence remains of moderate extent
and quality, and more rigorous research is required37.
One of the key findings from the review of task-shifted
care was that quality of care tended to suffer when the
complexity of the intervention increased37. The quality
of training is critical, and there is a need for ongoing
support to maintain motivation and fidelity. Barriers
to task-shifting included institutional and professional
resistance.
In better resourced HIC, it might be assumed that
the main objective of task-shifting might be to reduce
costs. However, coverage levels of dementia services
need to increase, and as the numbers of people with dementia increase inexorably, resource limitations will
become increasingly apparent. A key objective of taskshifting
is to reduce the time needed to scale up the
health workforce, because the cadres performing the
shifted tasks require less training37. It is quicker and
cheaper to train practice nurses to carry out structured
diagnostic assessments in primary care, than to train
greatly increased numbers of neuropsychologists and
neurologists. For these and other reasons (localism,
person-centred care, and care coordination) there is
increasing interest in task-shifted community-based
models of care for older people.
Task-sharing
In reality, almost all task-shifted models of service
delivery include an element of task-sharing between
specialist and non-specialist services. As a minimum,
this requires a commitment to training, and ongoing
supervision and support. There also need to be clearly
defined referral protocols, to cater for instances
where the complexity or severity of a case, and/or
the assessments and interventions required exceeds
the non-specialist’s competence to provide safe
and effective care. Specialists are often involved
in the design, and sometimes the governance and
management, of task-shifted models of care40. In
collaborative, or shared care models specialists and
non-specialists work together to provide a service,
with the roles and activities of each, and their
interaction carefully designed. Such services may
be led by specialists or non-specialists. A critical
feature is effective sharing of information between
patient, and specialist and non-specialist. This is best
achieved through a single health information system,
sometimes held by the patient. From the point of view
of productive efficiency, the optimal skill mix is the
combination of health professionals that produce a
given level of healthcare services at a particular quality
for the lowest cost.
An integrated and co-ordinated approach
The World Health Organization has defined integrated
care as
“a concept bringing together inputs, delivery,
management and organization of services related
to diagnosis, treatment, care, rehabilitation and
health promotion. Integration is a means to
improve services in relation to access, quality, user
satisfaction and efficiency.”41
Horizontal integration refers to the linkage of different
disciplines or elements of care at the same level of
care, for example mental and physical healthcare, or
health and social care. Vertical integration refers to the
linkage of care at different levels of specialisation, for
example primary, secondary, and tertiary healthcare).
Integrated care is closely related to the concept of
continuity of care, which is often best viewed through
the patient’s perspective of navigating their way
through the health and social care systems. There are
at least three relevant components to continuity of
care41:
1. Continuity of information (best achieved by a single
information system, or by shared access to records
and highly effective communication),
2. Continuity across the primary-secondary care
interface (collaborative care models, clear and
responsive referral protocols and pathways,
effective communication and discharge planning
from specialist to generalist care), and
3. Provider continuity, seeing the same professional
each time, with the opportunity to establish a
therapeutic, trusting relationship (a role often filled
by the primary care physician, a key worker, or case
manager).
There is ample evidence that dementia care systems
have failed to achieve acceptable levels of integration42.
Care processes are characterised by fragmentation;
primary and secondary care health services, and
social care often operate relatively autonomously
with too little communication, and some duplication
of activities43,44. There are often unacceptable delays
in accessing specialist services9,45–47, and, in some
systems, structural barriers to making referrals from
primary care19,25. Multimorbidity is highly prevalent
among people with dementia, and poses challenges
for integrated management of chronic cognitive, mental
and physical health conditions48–51. Multimorbidity
increases sharply with age, and is strongly associated
with impaired quality of life52, disability, dependence53
and mortality54. Those with multimorbidity account
for 96% and those with more than five conditions for
68% of US Medicare expenditure, and unnecessary
hospitalisations increase exponentially with increasing
multimorbidity55,56. Rigid application of clinical
practice guidelines for single disorders may contribute
to polypharmacy, adverse drug interactions and
unnecessary cost57. A holistic approach has been
advocated, with comprehensive assessment, leading
to well-integrated continuing care, focussing first
and foremost upon patient preferences in an effort to
streamline care and increase its acceptability58,59.
1.7 Health system level interventions to
improve the quality of dementia care
Case management
The Case Management Society of America defines
case management as “a collaborative process of
assessment, planning, facilitation, care coordination
and advocacy for options and services to meet an
individual’s and family’s comprehensive health needs through communication and available resources to
promote quality cost-effective outcomes”.60
The case manager promotes integration of care,
first, through provider continuity. They are a constant
point of contact and reference for the patient and
their family, while multiple services might be involved
in providing care. Their core roles include advocacy,
communication, education, identification of service
resources and service facilitation60. They help the
patient and family to negotiate the complexities of
the care system, promote self-management, and
can help ensure that care is efficient, and prioritised
in a way that is consistent with individual values
and preferences. There is often an element of taskshifting
implicit in case management, since the case
manager is an example of a new professional cadre
with specific training and skills for a defined set of
tasks. In dementia care, there is particular interest in
the concept of case managers operating at the level
of primary care61,62. Primary care physicians are the
first health system contact for early diagnosis and
management of dementia, but primary healthcare
systems are not yet equipped to deal with the diverse
needs of patients and carers across the course of
the condition. Case management could, in principle,
increase the capacity of primary healthcare to attend to
these needs, improve the quality of dementia care, and
provide cost-effective coordination of services.
Care pathways
What is a care pathway?
The concept of the care pathway has become
increasingly influential in many domains of health
service management and research, including
the delivery of care for chronic conditions. The
fundamental principle is to apply a structured and
organised approach to the planning, resourcing
and delivery of continuing care. While every patient
goes through a care process, and these vary among
patients with particular conditions, care pathways are
about planning and managing those processes, in
advance, for defined groups of individuals. Operational
management, end-to-end, of a care process differs
from the more conventional activity of managing care
units (in healthcare terms, hospitals, primary healthcare
facilities or services).
There are several definitions of care pathways.
Schrijvers et al refer to “process innovations
that focus on improving the organisation of care
processes”63. The European Pathway Association
defines a care pathway as “a complex intervention
for the mutual decision making and organization of
care processes for a well-defined group of patients
during a well-defined period”64,65. In the UK, the
term “integrated care pathway” is used to emphasise
the coordination of different elements along the
pathway, “a multidisciplinary outline of anticipated
care, placed in an appropriate timeframe, to help a
patient with a specific condition or set of symptoms
move progressively through a clinical experience
to positive outcomes”66. However, others consider
this tautologous; all care pathways are by definition
integrated, given that avoidance of fragmented care
processes is one of the main objectives63. This aspect
is highlighted by the European Pathway Association’s
defining characteristics of a care pathway65:
• An explicit statement of the goals and key elements
of care based on evidence, best practice and
patient expectations
• The facilitations of the communication and
coordination of roles, and sequencing the activities
of the multidisciplinary care team, patients and
their relatives
• The documentation, monitoring, and evaluation of
variances and outcomes
• The identification of relevant resources
A care pathway approach to continuing care
comprises63:
1. a care plan for each individual patient (patient
planning and protocol);
2. the planning of care in care pathways (patient group
planning and control);
3. the capacity planning of professionals, equipment
and space (resource planning and control);
4. the planning of the number of patients to be treated
and care activities to be carried out (patient volume
planning and control), and
5. the long-term policy of the institution (strategic
planning).
Not all healthcare activities lend themselves to a care
pathway approach, since not all care is provided for a
“well-defined patient group” and a “well-defined period
of time”. There is clearly a world of difference, in this
respect, between inpatient surgery for inguinal hernia,
and dementia care. For continuing care of chronic
conditions, care plans may need to be drawn up and
delivered flexibly, contingent upon differing needs,
clinical trajectories and responses to intervention. A
‘stepped care’ approach is often used, whereby a
patient first receives the most effective, least invasive,
least expensive and shortest form of assessment
or intervention, given the nature and severity of
the problem. Following review assessment and/or
intervention can be escalated to the next level where
necessary.
How might a care pathway approach be
applicable to dementia care?
Dementia care would seem, at first pass, an
unpromising candidate for application of the care
pathway approach67. Patients present and are
diagnosed at different stages in the disease process.
The course of the condition can be highly variable,
in terms of deterioration in cognitive and functional
abilities, and onset of behavioural and psychological
symptoms. The impact on the individual and their
family, and the consequent need for additional care
and support, will be highly context dependent.
Services strive to deliver person-centred care
throughout, emphasising the need to elicit, understand
and respond to changing needs in the context of
values and preferences. Far from a ‘well-defined time
period’, the need for care starts with help-seeking prior
to diagnosis, and extends across the disease course,
to death and beyond. And yet, within limits, there
are aspects of the evolution of the condition, and the
needs for evidence-based intervention and support at
particular phases of the process that are predictable.
The course of dementia tends, by definition, to be
progressive, although there may be ‘plateau’ periods.
For dementia, monitoring, care and support needs
to be continuous, but particular activities may be
indicated at particular phases of the condition. Recent
developments to the care pathway approach include
a distinction between highly structured fixed time care
pathways (e.g. inguinal hernia surgery) and non-fixed
time but phase-oriented care pathways63, which would
be more applicable for dementia care.
The overall objective of a care pathway would be to
provide seamless high quality care that is responsive,
flexible and continuing, with the aim of maximising
independence and participation, and optimising health
and quality of life for patient and carers throughout.
Phase-orientated care for people with dementia
People with dementia have a right to a timely diagnosis,
well made68. The concept of a timely diagnosis was
advanced by the INTERDEM group, conducting an
analysis of ‘The primary care diagnosis of dementia
in Europe’ using multidisciplinary, multinational expert
groups, to establish the potential for a consensus
guideline69.
“Timely diagnosis is defined as the time when the
patient or caregiver and the primary care physician
recognize that a dementia syndrome may be
developing. The preference for timely diagnosis
implies that methodologies should concentrate not
on population screening, but on a speedy response
to the first reported signs of changed behaviour and
functioning in the patient.”69
Among the proposed benefits of a timely diagnosis
is the relief gained from better understanding of
symptoms that have led to concern68. A diagnosis
is well made when the process of diagnosis and
diagnostic disclosure is perceived and experienced
as positive and helpful by patient and family. This may
take time, since acceptance may be preceded by
denial, anger, and grief. Good practice for disclosing
dementia diagnosis should include: preparation;
integrating family members; exploring the patient’s
perspective; disclosing the diagnosis; responding to
patient reactions; focusing on quality of life and wellbeing;
planning for the future; and communicating
effectively70. Other benefits of a timely diagnosis
are the opportunities to engage in health promotion,
optimise current medical management, maximise
decision making autonomy, plan for the future, and
obtain information about available support services68.
This implies the need for a physical health and
medication review, a capacity assessment where
indicated, initiation of advanced care planning, and
signposting to community care services. There is
evidence to support the effectiveness of certain
interventions early in the disease course – these
include carer education, training and support, the
prescription of acetylcholinesterase inhibitors for those
who meet criteria, peer support groups for people
with dementia, behavioural activation for depressive
reactions, and, possibly, cognitive stimulation therapy.
The Scottish Government has made a commitment
to delivering a minimum of one year post-diagnostic
support, informed by the Alzheimer Scotland 5 Pillars
Model71 (understanding the illness and managing
symptoms; planning for future decision making;
supporting community connections; peer support; and
planning for future care), and co-ordinated by a Link
Worker.
Since the course of the condition, and the emergence
of complications, is not easy to predict, all people living
with dementia, and their family carers need regular
reviews, to monitor changes in cognitive and functional
ability, to optimise mental and physical health and
wellbeing through health promotion and managing
comorbidity, to attend to nutrition and hydration,
to identify, assess and manage the emergence of
behavioural and psychological symptoms, and to
reassess unmet needs for care and support. The care
inputs over this period of continuing care will depend
upon the results of these reviews, but there should
also be facilitated access to needs-driven advice,
support and reassessment in the intervals between
assessments.
Dementia is an incurable and life-limiting illness, and
the World Health Organization states that ‘every person
with a progressive illness has a right to palliative
care’72. Yet people living with dementia are particularly
unlikely to have access to palliative care services at
the end of life1. Palliative care affirms life and regards
dying as a normal process; intends neither to hasten
nor postpone death; provides relief from pain and other distressing symptoms; offers a support system to help
patients live as actively as possible until death, and to
help the family cope during the patient’s illness and in
their own bereavement73. Evidence suggests that while
carers can be resilient in the face of bereavement,
intervention and support services are needed most in
the period before the patient’s death74. Nevertheless, a
palliative care approach may be appropriate across the
illness course, with early advanced care planning, and
continuing review of care preferences.
Benefits and risks of a care pathway approach
There are multiple potential benefits associated with
the introduction of care pathways:
1. An increase in the coherence and consistency of
care between and among services, using evidencebased
guidelines
2. Improvements in the quality of care, through the
application and monitoring of quality standards and
outcomes
3. Improvements in the responsiveness of care,
through better resource planning and allocation,
and identification and removal of bottlenecks in the
system
4. The efficiency of care (and costs), through precise
and optimal role definition, better coordination, and
avoidance of duplication
There is empirical evidence to support these benefits.
In Belgium, 309 healthcare workers reported on 103
care processes for different health conditions in 49
hospitals, using the Care Process Self Evaluation
Tool (CPSET) to rate care processes according to
their degree of organisation75. Care processes that
were supported by formal care pathways were 8.9
times more likely to rate highly on the coordination of
care, 6.7 times more likely to rate highly on follow-up/
continuity of care, and 4.3 times more likely to rate
highly for overall care process quality.
On the other hand, there are legitimate concerns
that an over-concrete application of a care pathway
approach may lead to the mechanisation and
dehumanisation of care, removal of personal choice
and abandoning of an aspiration for a person-centred
approach, and the rationing of access to care. Samsi
and Manthorpe67, in reviewing the applicability of care
pathways to dementia care highlighted the multiple
possible meanings that might be attached to the
concept by service providers and service users; a
mechanism for the management and containment of
uncertainty and confusion, useful for the professional
as well as the person with dementia; a manual for
sequencing care activities; a guide to consumers,
indicating eligibility for care activities, or a guide to
self-management for dementia dyads, indicating the
appropriateness of care activities; and a manual for
“walking with” the person with dementia.
Examples of care pathways for dementia
While there are many examples of dementia care
service guidelines, few of these would qualify as
meeting the defining characteristics of a care pathway.
We have identified three examples, which, at least in
part fulfil these criteria.
1. The Queensland University of Technology
Clinical Practice Guidelines and Care Pathways
for People with Dementia Living in the
Community76
This care pathway was developed in collaboration with
State Government (Queensland Health). Caveats are
emphasised in a set of fundamental principles that
include recognition that people with dementia, their
carers and families are central to making choices about
care, and that service responses need to recognise
people’s individual care journeys. It is acknowledged
that the guidelines and pathways do not encompass
all care scenarios, and should be used flexibly. The
pathways focus on non-pharmacological care only.
The pathways are strongly evidence-based with a
systematic review of existing guidelines, and formal
evidence quality assessment. ‘Practice tips’ are also
provided, which constitute advice on good clinical
practice based upon multidisciplinary expert opinion
from the guideline development group. Assessment
tools are suggested to facilitate and monitor the
delivery of an effective continuum of care.
This care pathway is ‘phase-orientated’ with three
phases identified:
a. Recognition, Assessment and Diagnosis Phase
b. Post Diagnosis, Monitoring, Management and Care
Phase
c. The Advanced Phase
For each phase separate but interactive pathways
are provided for the general practitioner (primary
care physician), the health professional (specialist),
and the care worker (social care professional).
The recommended management strategies at
each phase are summarised in Table 1.1. The full
pathway document76 includes comprehensive clinical
algorithms, in the form of flow charts signifying
the assessments, management decisions and
management actions (including explicit referral
protocols) that need to be taken at each stage.
2. Quality Improvement in Neurology – Dementia
Measures Work Group Measurement Set for
Dementia Management (copyrighted by the
American Medical Association)19
The Advisory Council for Alzheimer’s Research, Care
and Dementia, established after the passage of the USA National Alzheimer’s Project Act, recommended
quality measures suitable for evaluating and tracking
dementia care in clinical settings. An interdisciplinary
Dementia Measures Work Group has developed
a measurement set applying to continuing care
after dementia has been diagnosed19. The premise
for this work was that; “health care for persons
with dementia is inconsistent, often suboptimal,
and largely unplanned; ethnic and socioeconomic
disparities are important influences on the quality
of dementia care; partnership with caregivers is
integral to improving care; and that the well-being
and behavioural stability of patients with dementia
is strongly influenced by the well-being of their
caregivers; and comprehensive integrated care and
quality improvement initiatives must be explicit and
practical”19. It includes all stages of dementia in a
single measure set, but calls for functional staging
(mild, moderate or severe dementia) in planning
care. It highlights the importance of palliative care
concepts to guide care prior to the advanced stages
of illness. The measurement set specifies annual
reassessment and updating of interventions and
care plans for dementia-related problems that affect
carers as well as people with dementia. For most
measures, care quality is indicated by the proportion
of eligible patients whose documented care meets the
identified goal. The Work Group considered that while
patient-reported outcomes were a desirable feature of
quality performance assessment, the heterogeneity
of the condition and its management precluded
their adoption19. The focus on process measures
alone might be considered to be a weakness, but,
as such, the measure set does provide the outline
of a prototypical structured care pathway. While this
is not an explicitly phase-orientated pathway, the
indicators fall into five categories of decision making
(Table 1.2): 1) assessment of the person with dementia
postdiagnosis (measures 1–4 and 6), 2) management
of neuropsychiatric symptoms (measure 5), 3) patient
safety (measures 7 and 8), 4) palliative care and endof-life
issues (measure 9), and 5) caregiver issues
(measure 10).
3. The World Health Organization Mental Health
Gap Action Programme (mhGAP) evidence
based guidelines and intervention guide77
The WHO mhGAP guidelines address nine priority
mental, neurological and substance use disorders;
dementia, depression, psychosis, bipolar disorders,
epilepsy, alcohol use disorders, drug use disorders,
self-harm/suicide, developmental and behavioural
disorders, and other significant emotional or medically
unexplained complaints. They have been developed
specifically for use by health-care providers working
in non-specialised healthcare settings after adaptation
for national and local needs. The explicit purpose is
to reduce the treatment gap for these conditions. The
guidelines comprise an expert consensus (from the
international Guideline Development Group) of those
elements of a package of care that are both evidencebased
and feasible, in principle, of being delivered by
non-specialists healthworkers in this context35,36,78.
The guidelines are transparently and strongly based
on evidence from systematic reviews of the literature.
Extensive supporting resources are provided on the WHO mhGAP website (http://www.who.int/mental_
health/mhgap/en/)
The accompanying mhGAP Intervention Guide
(mhGAP-IG), also developed through a systematic
review of evidence followed by an international
consultative and participatory process, is a technical
tool developed by WHO to assist in implementation
of mhGAP. Its purpose is described as “integrated
management of priority conditions using protocols
for clinical decision-making”, and as such essentially
constitutes a care pathway, structured around an
assess > decide > manage structure. For dementia,
the Intervention Guide provides an initial assessment
and management guide (does the person have
dementia/another priority mental disorder/BPSD? Are
cardiovascular disease and risk factors present? Does
the person suffer from other physical conditions? Is the
caregiver experiencing strain or in need of support?
‘Red flags’ are indicated for the need for immediate
referral to specialist services, where available (unusual
presentations, suspicion of delirium). Detailed
guidance is then provided for the process of identifying
dementia, providing psychosocial interventions
(managing BPSD, and interventions for carers), and
pharmacological interventions. There is also a detailed
plan for routine follow-up reviews. The intervention
guide (http://www.who.int/mental_health/publications/
mhGAP_intervention_guide/en/) is currently available
in Arabic, English, French, Japanese, Persian,
Portuguese, and Spanish.
The Dementia Measures Work Group concluded:
“The emphasis on dementia management in this
measurement set recognizes the enormous challenge
dementia presents to individual patients and their
caregivers, health care providers, public health, and
government and private insurers. While patients, caregivers, and health professionals await more
effective disease-modifying treatments for patients
with dementia, adherence to the measures outlined
here will improve the quality of life for patients and
caregivers with dementing illnesses.” 19
There are additional potential benefits. If standard
evidence and guideline-based care pathways are
adopted within a healthcare system, it become
possible to monitor the treatment gap (the inverse of
treatment coverage – see Figure 1). This is a critical
issue. Most health systems have been focusing on
diagnostic coverage, which is, currently, easier to
measure. However, diagnosis without a pathway
leading to assured and effective treatment and care
is, at best, a wasted effort. If routine assessment of
suitable outcome measures is introduced into the care
pathway, then it also becomes possible to measure
effective coverage, which is the ultimate goal for any
healthcare system.
1.8 Conclusion
This introductory overview of healthcare systems
for people living with dementia has identified the
importance of healthcare in general, and of primary
healthcare in particular to the maintenance of health
and wellbeing, and achievement of the best quality of
life for people with dementia and their carers. There
are, however, many problems with dementia healthcare
systems as currently constituted. The first is that they
are not yet capable of delivering adequate coverage
of basic healthcare services for people with dementia.
This is true for diagnosis, but there are also challenges
in delivering care that is responsive, continuous and
of appropriate quality (meeting guidelines and service
standards). We have seen that task-shifting and tasksharing,
including but not limited to increasing the
role and competencies of primary healthcare services
within the system, is likely to be a core strategy
for increasing diagnostic and treatment coverage.
Case management may be an important strategy for
improving integration and coordination of care, and
increasing treatment coverage. The introduction of
evidence-based care pathways, linked to process and
outcome indicators, should help to improve adherence
to healthcare quality standards, and allow transparent
monitoring of treatment coverage and effective
treatment coverage.
This overview defines the agenda for this World
Alzheimer Report:
We will
1 conduct a scoping review of recent research
evidence on the role of primary care within the
dementia healthcare system. This will include
evidence regarding the effectiveness of primary care
services in the detection and diagnosis of dementia,
and in the provision of continuing care. We will also
assess evidence on strategies and interventions
to enhance the quality of care provided by primary
healthcare services. Finally, we shall seek to identify
any studies that compare aspects of the quality of
care provided by non-specialist versus specialist
services, against the criterion of ‘non-inferiority’,
that is that the processes and outcomes achieved
should be at least no worse than those achieved by
specialist services – a critical justification for taskshifted
care.
2 conduct a scoping review of recent research
evidence regarding the effectiveness of case
management, wherever it is located within the health
and social care system, with respect to outcomes
for people with dementia and their carers, and
evidence for improved efficiency of delivery of health
and social care.
3 conduct a scoping review of hospitalisation
of people with dementia seeking to clarify the
extent of and reasons for hospitalisation, the
associated harms, the excess healthcare costs, the
effectiveness of approaches to avoid hospitalisation,
and reduce harm and improve outcomes for those
who are admitted.
4 review the latest evidence on palliative and end-oflife
care for people living with dementia, updating
the review that we conducted for the 2013 World
Alzheimer Report1.
5 define outline healthcare pathways for people living
with dementia for relatively well-resourced HIC, and
less well-resourced LMIC settings. For selected
HIC (Canada, South Korea, Switzerland) we will
propose and compare two model pathways, one
based on a specialist model of care, and one on a
more task-shifted/task-shared counterfactual, with
more roles performed by non-specialists, estimating
the increasing costs of care from 2015 to 2031,
accounting for projected increased in the numbers
of people living with dementia, and a projected
increase in diagnostic coverage from 50% to 75%.
For selected LMIC (China, Indonesia, Mexico, South
Africa), we shall assume that, currently, dementia
healthcare is provided for only a small proportion
of people, using a HIC model of specialist care. We
will then estimate the increasing costs from 2015 to
2031, assuming that the increased coverage (from
5% in low income countries and 10% in middle
income countries, to 50%) is achieved through
implementation of task-shifted care pathways, as
recommended by the World Health Organization
Mental Health Gap Action Plan (mhGAP).
This agenda is, we believe, highly relevant to the future
of dementia healthcare, worldwide.
Table 1.1
Queensland University of Technology Clinical Practice Guidelines and Care Pathways for People with Dementia Living in the
Community76
Health and social care systems around the world share
three key challenges
• Improving the coverage of care
• Improving the quality of care
• Achieving the first two objectives, while limiting,
and rendering affordable, the costs of health and
social care in the context of population ageing
These challenges can only be met by increasing
the cost efficiency with which care is delivered, and
developing future-proof, sustainable financing models.
Coverage and equity of access should be important
considerations throughout. Policy decisions regarding
the scope and ambition, and the design and delivery of
services for people with dementia, should be evidencebased.
Economic models need to be developed to
guide policy decisions, indicating the incremental costs
of scaling up different service models. These will vary
between settings, depending upon the cost of the
service (driven mainly by staff costs), existing coverage
levels, and the nature of cost savings where these are
to be anticipated.
The multidisciplinary work group established by
the Alzheimer’s Foundation of America and the
Alzheimer’s Drug Discovery Foundation to review
evidence for screening implementation and to evaluate
the implications of routine dementia detection for
healthcare redesign called for an effort to “Define
‘ownership’ of dementia in the layout of health care”. In
their view
“From the standpoint of health care delivery, initial
screening for cognitive impairment is most practical
in the primary care setting... The best setting for
further diagnostic evaluation and comprehensive
management is unclear, however... The workgroup
encourages systematic consideration of the
respective roles of primary and specialty care in the
long-range management of dementia patients, as
part of the work of the National Alzheimer’s Project
Act implementation plan. The discussion should
include consideration of primary care–specialty
care partnerships, specialized chronic care
manager roles within primary care, and research
on identifying specific subgroups of patients
and families who require ongoing complex or
specialized management.”
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prioritises meeting population level needs, rather
than merely optimising the quality of care for the
minority who access high quality specialist care.
There is, therefore, a focus upon increasing
coverage (the proportion of those in need that
receive care), and effective coverage (the proportion of those in need whose needs are
met). Note that diagnostic coverage places a ceiling on
treatment coverage, since, without a diagnosis, it is not
possible to deliver comprehensive structured dementia
care (see Figure 1.1). Levels of treatment coverage
will therefore be lower than the levels of diagnostic
coverage provided in previous sections, since many
of those diagnosed are not in receipt of appropriate
continuing care. Levels of effective coverage will be
lower still. Increasing coverage requires promoting
demand (help-seeking) through increased awareness,
scaling up the supply of diagnostic and care services
to meet the demand, and a reduction in the barriers to
access. Aside from coverage, the success of scaling
up initiatives are conventionally judged upon the
equity with which care is delivered (equitable access
to services based only upon need), and the outcomes
achieved.
Figure 1.1
Dementia diagnostic and treatment coverage
Currently, within HIC, models of health service care for
dementia tend to be highly specialised, from diagnosis
onwards, with very little formal recognition of the role
of primary care services, or allocation of tasks to this
sector. There are many potential limitations to this
approach. It is unlikely that full coverage of services
could be attained, and efficiency has probably not
been optimised. Those who have received a diagnosis
often do not receive seamless and continuing care,
which is beyond the capacity and reach of specialist
services working in isolation. The specialist model of
dementia care does not facilitate care-coordination
for those with complex multimorbidities, which is a
core function of primary healthcare. In most LMIC, specialist services are far too under-resourced to
have the capacity to deal with current levels of need,
and demand (numbers affected) is likely to increase
more rapidly than the development of the specialist
workforce. When existing healthcare resources are
not well-matched to the local healthcare need, then
services become less accessible, and even when they
are accessible, they are less affordable. Some degree
of task-shifting to non-specialist healthcare workers
will therefore be an essential component of scaling up
services in resource-poor settings35,36. Collaborative or
shared-care models distribute tasks between primary
and secondary care services in a structured and
organized fashion.
Task-shifting
Task-shifting is defined as delegating selected tasks
to existing or new health professional cadres with
either less training or narrowly tailored training37. This
may involve shifting tasks from higher- to lower-skilled
health workers (e.g. from a neurologist specialist
doctor to a PCP), or creating new professional cadres,
whereby tasks are shifted from workers with more
general training to workers with specific training for
a particular task (e.g. from a PCP to a dementia case
manager). The two underlying assumptions are that the
unit cost of the task-shifted option is cheaper, and that
the quality of care and its outcomes are equivalent. The
less-specialised cadre are generally more numerous,
and hence have the capacity to alleviate the resource
constraints that are barriers to achieving increased
coverage. In technical terms, the primary objective
of task-shifting is to increase productive efficiency,
that is, to increase the volume of healthcare services
provided at a given quality and cost, or, alternatively,
to provide the same level of healthcare services at a
given quality, but at a lower cost37. Hence task-shifting
can be a relevant strategy for resource-limited LMIC
(with the aim of increasing coverage). Evidence from
LMIC indicates that, with adaptation and appropriate
training and supervision, it is feasible for interventions
developed to be delivered by specialist doctors to be
taken on by non-specialists (and non-doctors) without
an adverse effect on clinical outcomes37–39. Although
this literature is growing, as the authors of one review
point out the evidence remains of moderate extent
and quality, and more rigorous research is required37.
One of the key findings from the review of task-shifted
care was that quality of care tended to suffer when the
complexity of the intervention increased37. The quality
of training is critical, and there is a need for ongoing
support to maintain motivation and fidelity. Barriers
to task-shifting included institutional and professional
resistance.
In better resourced HIC, it might be assumed that
the main objective of task-shifting might be to reduce
costs. However, coverage levels of dementia services
need to increase, and as the numbers of people with dementia increase inexorably, resource limitations will
become increasingly apparent. A key objective of taskshifting
is to reduce the time needed to scale up the
health workforce, because the cadres performing the
shifted tasks require less training37. It is quicker and
cheaper to train practice nurses to carry out structured
diagnostic assessments in primary care, than to train
greatly increased numbers of neuropsychologists and
neurologists. For these and other reasons (localism,
person-centred care, and care coordination) there is
increasing interest in task-shifted community-based
models of care for older people.
Task-sharing
In reality, almost all task-shifted models of service
delivery include an element of task-sharing between
specialist and non-specialist services. As a minimum,
this requires a commitment to training, and ongoing
supervision and support. There also need to be clearly
defined referral protocols, to cater for instances
where the complexity or severity of a case, and/or
the assessments and interventions required exceeds
the non-specialist’s competence to provide safe
and effective care. Specialists are often involved
in the design, and sometimes the governance and
management, of task-shifted models of care40. In
collaborative, or shared care models specialists and
non-specialists work together to provide a service,
with the roles and activities of each, and their
interaction carefully designed. Such services may
be led by specialists or non-specialists. A critical
feature is effective sharing of information between
patient, and specialist and non-specialist. This is best
achieved through a single health information system,
sometimes held by the patient. From the point of view
of productive efficiency, the optimal skill mix is the
combination of health professionals that produce a
given level of healthcare services at a particular quality
for the lowest cost.
An integrated and co-ordinated approach
The World Health Organization has defined integrated
care as
“a concept bringing together inputs, delivery,
management and organization of services related
to diagnosis, treatment, care, rehabilitation and
health promotion. Integration is a means to
improve services in relation to access, quality, user
satisfaction and efficiency.”41
Horizontal integration refers to the linkage of different
disciplines or elements of care at the same level of
care, for example mental and physical healthcare, or
health and social care. Vertical integration refers to the
linkage of care at different levels of specialisation, for
example primary, secondary, and tertiary healthcare).
Integrated care is closely related to the concept of
continuity of care, which is often best viewed through
the patient’s perspective of navigating their way
through the health and social care systems. There are
at least three relevant components to continuity of
care41:
1. Continuity of information (best achieved by a single
information system, or by shared access to records
and highly effective communication),
2. Continuity across the primary-secondary care
interface (collaborative care models, clear and
responsive referral protocols and pathways,
effective communication and discharge planning
from specialist to generalist care), and
3. Provider continuity, seeing the same professional
each time, with the opportunity to establish a
therapeutic, trusting relationship (a role often filled
by the primary care physician, a key worker, or case
manager).
There is ample evidence that dementia care systems
have failed to achieve acceptable levels of integration42.
Care processes are characterised by fragmentation;
primary and secondary care health services, and
social care often operate relatively autonomously
with too little communication, and some duplication
of activities43,44. There are often unacceptable delays
in accessing specialist services9,45–47, and, in some
systems, structural barriers to making referrals from
primary care19,25. Multimorbidity is highly prevalent
among people with dementia, and poses challenges
for integrated management of chronic cognitive, mental
and physical health conditions48–51. Multimorbidity
increases sharply with age, and is strongly associated
with impaired quality of life52, disability, dependence53
and mortality54. Those with multimorbidity account
for 96% and those with more than five conditions for
68% of US Medicare expenditure, and unnecessary
hospitalisations increase exponentially with increasing
multimorbidity55,56. Rigid application of clinical
practice guidelines for single disorders may contribute
to polypharmacy, adverse drug interactions and
unnecessary cost57. A holistic approach has been
advocated, with comprehensive assessment, leading
to well-integrated continuing care, focussing first
and foremost upon patient preferences in an effort to
streamline care and increase its acceptability58,59.
1.7 Health system level interventions to
improve the quality of dementia care
Case management
The Case Management Society of America defines
case management as “a collaborative process of
assessment, planning, facilitation, care coordination
and advocacy for options and services to meet an
individual’s and family’s comprehensive health needs through communication and available resources to
promote quality cost-effective outcomes”.60
The case manager promotes integration of care,
first, through provider continuity. They are a constant
point of contact and reference for the patient and
their family, while multiple services might be involved
in providing care. Their core roles include advocacy,
communication, education, identification of service
resources and service facilitation60. They help the
patient and family to negotiate the complexities of
the care system, promote self-management, and
can help ensure that care is efficient, and prioritised
in a way that is consistent with individual values
and preferences. There is often an element of taskshifting
implicit in case management, since the case
manager is an example of a new professional cadre
with specific training and skills for a defined set of
tasks. In dementia care, there is particular interest in
the concept of case managers operating at the level
of primary care61,62. Primary care physicians are the
first health system contact for early diagnosis and
management of dementia, but primary healthcare
systems are not yet equipped to deal with the diverse
needs of patients and carers across the course of
the condition. Case management could, in principle,
increase the capacity of primary healthcare to attend to
these needs, improve the quality of dementia care, and
provide cost-effective coordination of services.
Care pathways
What is a care pathway?
The concept of the care pathway has become
increasingly influential in many domains of health
service management and research, including
the delivery of care for chronic conditions. The
fundamental principle is to apply a structured and
organised approach to the planning, resourcing
and delivery of continuing care. While every patient
goes through a care process, and these vary among
patients with particular conditions, care pathways are
about planning and managing those processes, in
advance, for defined groups of individuals. Operational
management, end-to-end, of a care process differs
from the more conventional activity of managing care
units (in healthcare terms, hospitals, primary healthcare
facilities or services).
There are several definitions of care pathways.
Schrijvers et al refer to “process innovations
that focus on improving the organisation of care
processes”63. The European Pathway Association
defines a care pathway as “a complex intervention
for the mutual decision making and organization of
care processes for a well-defined group of patients
during a well-defined period”64,65. In the UK, the
term “integrated care pathway” is used to emphasise
the coordination of different elements along the
pathway, “a multidisciplinary outline of anticipated
care, placed in an appropriate timeframe, to help a
patient with a specific condition or set of symptoms
move progressively through a clinical experience
to positive outcomes”66. However, others consider
this tautologous; all care pathways are by definition
integrated, given that avoidance of fragmented care
processes is one of the main objectives63. This aspect
is highlighted by the European Pathway Association’s
defining characteristics of a care pathway65:
• An explicit statement of the goals and key elements
of care based on evidence, best practice and
patient expectations
• The facilitations of the communication and
coordination of roles, and sequencing the activities
of the multidisciplinary care team, patients and
their relatives
• The documentation, monitoring, and evaluation of
variances and outcomes
• The identification of relevant resources
A care pathway approach to continuing care
comprises63:
1. a care plan for each individual patient (patient
planning and protocol);
2. the planning of care in care pathways (patient group
planning and control);
3. the capacity planning of professionals, equipment
and space (resource planning and control);
4. the planning of the number of patients to be treated
and care activities to be carried out (patient volume
planning and control), and
5. the long-term policy of the institution (strategic
planning).
Not all healthcare activities lend themselves to a care
pathway approach, since not all care is provided for a
“well-defined patient group” and a “well-defined period
of time”. There is clearly a world of difference, in this
respect, between inpatient surgery for inguinal hernia,
and dementia care. For continuing care of chronic
conditions, care plans may need to be drawn up and
delivered flexibly, contingent upon differing needs,
clinical trajectories and responses to intervention. A
‘stepped care’ approach is often used, whereby a
patient first receives the most effective, least invasive,
least expensive and shortest form of assessment
or intervention, given the nature and severity of
the problem. Following review assessment and/or
intervention can be escalated to the next level where
necessary.
How might a care pathway approach be
applicable to dementia care?
Dementia care would seem, at first pass, an
unpromising candidate for application of the care
pathway approach67. Patients present and are
diagnosed at different stages in the disease process.
The course of the condition can be highly variable,
in terms of deterioration in cognitive and functional
abilities, and onset of behavioural and psychological
symptoms. The impact on the individual and their
family, and the consequent need for additional care
and support, will be highly context dependent.
Services strive to deliver person-centred care
throughout, emphasising the need to elicit, understand
and respond to changing needs in the context of
values and preferences. Far from a ‘well-defined time
period’, the need for care starts with help-seeking prior
to diagnosis, and extends across the disease course,
to death and beyond. And yet, within limits, there
are aspects of the evolution of the condition, and the
needs for evidence-based intervention and support at
particular phases of the process that are predictable.
The course of dementia tends, by definition, to be
progressive, although there may be ‘plateau’ periods.
For dementia, monitoring, care and support needs
to be continuous, but particular activities may be
indicated at particular phases of the condition. Recent
developments to the care pathway approach include
a distinction between highly structured fixed time care
pathways (e.g. inguinal hernia surgery) and non-fixed
time but phase-oriented care pathways63, which would
be more applicable for dementia care.
The overall objective of a care pathway would be to
provide seamless high quality care that is responsive,
flexible and continuing, with the aim of maximising
independence and participation, and optimising health
and quality of life for patient and carers throughout.
Phase-orientated care for people with dementia
People with dementia have a right to a timely diagnosis,
well made68. The concept of a timely diagnosis was
advanced by the INTERDEM group, conducting an
analysis of ‘The primary care diagnosis of dementia
in Europe’ using multidisciplinary, multinational expert
groups, to establish the potential for a consensus
guideline69.
“Timely diagnosis is defined as the time when the
patient or caregiver and the primary care physician
recognize that a dementia syndrome may be
developing. The preference for timely diagnosis
implies that methodologies should concentrate not
on population screening, but on a speedy response
to the first reported signs of changed behaviour and
functioning in the patient.”69
Among the proposed benefits of a timely diagnosis
is the relief gained from better understanding of
symptoms that have led to concern68. A diagnosis
is well made when the process of diagnosis and
diagnostic disclosure is perceived and experienced
as positive and helpful by patient and family. This may
take time, since acceptance may be preceded by
denial, anger, and grief. Good practice for disclosing
dementia diagnosis should include: preparation;
integrating family members; exploring the patient’s
perspective; disclosing the diagnosis; responding to
patient reactions; focusing on quality of life and wellbeing;
planning for the future; and communicating
effectively70. Other benefits of a timely diagnosis
are the opportunities to engage in health promotion,
optimise current medical management, maximise
decision making autonomy, plan for the future, and
obtain information about available support services68.
This implies the need for a physical health and
medication review, a capacity assessment where
indicated, initiation of advanced care planning, and
signposting to community care services. There is
evidence to support the effectiveness of certain
interventions early in the disease course – these
include carer education, training and support, the
prescription of acetylcholinesterase inhibitors for those
who meet criteria, peer support groups for people
with dementia, behavioural activation for depressive
reactions, and, possibly, cognitive stimulation therapy.
The Scottish Government has made a commitment
to delivering a minimum of one year post-diagnostic
support, informed by the Alzheimer Scotland 5 Pillars
Model71 (understanding the illness and managing
symptoms; planning for future decision making;
supporting community connections; peer support; and
planning for future care), and co-ordinated by a Link
Worker.
Since the course of the condition, and the emergence
of complications, is not easy to predict, all people living
with dementia, and their family carers need regular
reviews, to monitor changes in cognitive and functional
ability, to optimise mental and physical health and
wellbeing through health promotion and managing
comorbidity, to attend to nutrition and hydration,
to identify, assess and manage the emergence of
behavioural and psychological symptoms, and to
reassess unmet needs for care and support. The care
inputs over this period of continuing care will depend
upon the results of these reviews, but there should
also be facilitated access to needs-driven advice,
support and reassessment in the intervals between
assessments.
Dementia is an incurable and life-limiting illness, and
the World Health Organization states that ‘every person
with a progressive illness has a right to palliative
care’72. Yet people living with dementia are particularly
unlikely to have access to palliative care services at
the end of life1. Palliative care affirms life and regards
dying as a normal process; intends neither to hasten
nor postpone death; provides relief from pain and other distressing symptoms; offers a support system to help
patients live as actively as possible until death, and to
help the family cope during the patient’s illness and in
their own bereavement73. Evidence suggests that while
carers can be resilient in the face of bereavement,
intervention and support services are needed most in
the period before the patient’s death74. Nevertheless, a
palliative care approach may be appropriate across the
illness course, with early advanced care planning, and
continuing review of care preferences.
Benefits and risks of a care pathway approach
There are multiple potential benefits associated with
the introduction of care pathways:
1. An increase in the coherence and consistency of
care between and among services, using evidencebased
guidelines
2. Improvements in the quality of care, through the
application and monitoring of quality standards and
outcomes
3. Improvements in the responsiveness of care,
through better resource planning and allocation,
and identification and removal of bottlenecks in the
system
4. The efficiency of care (and costs), through precise
and optimal role definition, better coordination, and
avoidance of duplication
There is empirical evidence to support these benefits.
In Belgium, 309 healthcare workers reported on 103
care processes for different health conditions in 49
hospitals, using the Care Process Self Evaluation
Tool (CPSET) to rate care processes according to
their degree of organisation75. Care processes that
were supported by formal care pathways were 8.9
times more likely to rate highly on the coordination of
care, 6.7 times more likely to rate highly on follow-up/
continuity of care, and 4.3 times more likely to rate
highly for overall care process quality.
On the other hand, there are legitimate concerns
that an over-concrete application of a care pathway
approach may lead to the mechanisation and
dehumanisation of care, removal of personal choice
and abandoning of an aspiration for a person-centred
approach, and the rationing of access to care. Samsi
and Manthorpe67, in reviewing the applicability of care
pathways to dementia care highlighted the multiple
possible meanings that might be attached to the
concept by service providers and service users; a
mechanism for the management and containment of
uncertainty and confusion, useful for the professional
as well as the person with dementia; a manual for
sequencing care activities; a guide to consumers,
indicating eligibility for care activities, or a guide to
self-management for dementia dyads, indicating the
appropriateness of care activities; and a manual for
“walking with” the person with dementia.
Examples of care pathways for dementia
While there are many examples of dementia care
service guidelines, few of these would qualify as
meeting the defining characteristics of a care pathway.
We have identified three examples, which, at least in
part fulfil these criteria.
1. The Queensland University of Technology
Clinical Practice Guidelines and Care Pathways
for People with Dementia Living in the
Community76
This care pathway was developed in collaboration with
State Government (Queensland Health). Caveats are
emphasised in a set of fundamental principles that
include recognition that people with dementia, their
carers and families are central to making choices about
care, and that service responses need to recognise
people’s individual care journeys. It is acknowledged
that the guidelines and pathways do not encompass
all care scenarios, and should be used flexibly. The
pathways focus on non-pharmacological care only.
The pathways are strongly evidence-based with a
systematic review of existing guidelines, and formal
evidence quality assessment. ‘Practice tips’ are also
provided, which constitute advice on good clinical
practice based upon multidisciplinary expert opinion
from the guideline development group. Assessment
tools are suggested to facilitate and monitor the
delivery of an effective continuum of care.
This care pathway is ‘phase-orientated’ with three
phases identified:
a. Recognition, Assessment and Diagnosis Phase
b. Post Diagnosis, Monitoring, Management and Care
Phase
c. The Advanced Phase
For each phase separate but interactive pathways
are provided for the general practitioner (primary
care physician), the health professional (specialist),
and the care worker (social care professional).
The recommended management strategies at
each phase are summarised in Table 1.1. The full
pathway document76 includes comprehensive clinical
algorithms, in the form of flow charts signifying
the assessments, management decisions and
management actions (including explicit referral
protocols) that need to be taken at each stage.
2. Quality Improvement in Neurology – Dementia
Measures Work Group Measurement Set for
Dementia Management (copyrighted by the
American Medical Association)19
The Advisory Council for Alzheimer’s Research, Care
and Dementia, established after the passage of the USA National Alzheimer’s Project Act, recommended
quality measures suitable for evaluating and tracking
dementia care in clinical settings. An interdisciplinary
Dementia Measures Work Group has developed
a measurement set applying to continuing care
after dementia has been diagnosed19. The premise
for this work was that; “health care for persons
with dementia is inconsistent, often suboptimal,
and largely unplanned; ethnic and socioeconomic
disparities are important influences on the quality
of dementia care; partnership with caregivers is
integral to improving care; and that the well-being
and behavioural stability of patients with dementia
is strongly influenced by the well-being of their
caregivers; and comprehensive integrated care and
quality improvement initiatives must be explicit and
practical”19. It includes all stages of dementia in a
single measure set, but calls for functional staging
(mild, moderate or severe dementia) in planning
care. It highlights the importance of palliative care
concepts to guide care prior to the advanced stages
of illness. The measurement set specifies annual
reassessment and updating of interventions and
care plans for dementia-related problems that affect
carers as well as people with dementia. For most
measures, care quality is indicated by the proportion
of eligible patients whose documented care meets the
identified goal. The Work Group considered that while
patient-reported outcomes were a desirable feature of
quality performance assessment, the heterogeneity
of the condition and its management precluded
their adoption19. The focus on process measures
alone might be considered to be a weakness, but,
as such, the measure set does provide the outline
of a prototypical structured care pathway. While this
is not an explicitly phase-orientated pathway, the
indicators fall into five categories of decision making
(Table 1.2): 1) assessment of the person with dementia
postdiagnosis (measures 1–4 and 6), 2) management
of neuropsychiatric symptoms (measure 5), 3) patient
safety (measures 7 and 8), 4) palliative care and endof-life
issues (measure 9), and 5) caregiver issues
(measure 10).
3. The World Health Organization Mental Health
Gap Action Programme (mhGAP) evidence
based guidelines and intervention guide77
The WHO mhGAP guidelines address nine priority
mental, neurological and substance use disorders;
dementia, depression, psychosis, bipolar disorders,
epilepsy, alcohol use disorders, drug use disorders,
self-harm/suicide, developmental and behavioural
disorders, and other significant emotional or medically
unexplained complaints. They have been developed
specifically for use by health-care providers working
in non-specialised healthcare settings after adaptation
for national and local needs. The explicit purpose is
to reduce the treatment gap for these conditions. The
guidelines comprise an expert consensus (from the
international Guideline Development Group) of those
elements of a package of care that are both evidencebased
and feasible, in principle, of being delivered by
non-specialists healthworkers in this context35,36,78.
The guidelines are transparently and strongly based
on evidence from systematic reviews of the literature.
Extensive supporting resources are provided on the WHO mhGAP website (http://www.who.int/mental_
health/mhgap/en/)
The accompanying mhGAP Intervention Guide
(mhGAP-IG), also developed through a systematic
review of evidence followed by an international
consultative and participatory process, is a technical
tool developed by WHO to assist in implementation
of mhGAP. Its purpose is described as “integrated
management of priority conditions using protocols
for clinical decision-making”, and as such essentially
constitutes a care pathway, structured around an
assess > decide > manage structure. For dementia,
the Intervention Guide provides an initial assessment
and management guide (does the person have
dementia/another priority mental disorder/BPSD? Are
cardiovascular disease and risk factors present? Does
the person suffer from other physical conditions? Is the
caregiver experiencing strain or in need of support?
‘Red flags’ are indicated for the need for immediate
referral to specialist services, where available (unusual
presentations, suspicion of delirium). Detailed
guidance is then provided for the process of identifying
dementia, providing psychosocial interventions
(managing BPSD, and interventions for carers), and
pharmacological interventions. There is also a detailed
plan for routine follow-up reviews. The intervention
guide (http://www.who.int/mental_health/publications/
mhGAP_intervention_guide/en/) is currently available
in Arabic, English, French, Japanese, Persian,
Portuguese, and Spanish.
The Dementia Measures Work Group concluded:
“The emphasis on dementia management in this
measurement set recognizes the enormous challenge
dementia presents to individual patients and their
caregivers, health care providers, public health, and
government and private insurers. While patients, caregivers, and health professionals await more
effective disease-modifying treatments for patients
with dementia, adherence to the measures outlined
here will improve the quality of life for patients and
caregivers with dementing illnesses.” 19
There are additional potential benefits. If standard
evidence and guideline-based care pathways are
adopted within a healthcare system, it become
possible to monitor the treatment gap (the inverse of
treatment coverage – see Figure 1). This is a critical
issue. Most health systems have been focusing on
diagnostic coverage, which is, currently, easier to
measure. However, diagnosis without a pathway
leading to assured and effective treatment and care
is, at best, a wasted effort. If routine assessment of
suitable outcome measures is introduced into the care
pathway, then it also becomes possible to measure
effective coverage, which is the ultimate goal for any
healthcare system.
1.8 Conclusion
This introductory overview of healthcare systems
for people living with dementia has identified the
importance of healthcare in general, and of primary
healthcare in particular to the maintenance of health
and wellbeing, and achievement of the best quality of
life for people with dementia and their carers. There
are, however, many problems with dementia healthcare
systems as currently constituted. The first is that they
are not yet capable of delivering adequate coverage
of basic healthcare services for people with dementia.
This is true for diagnosis, but there are also challenges
in delivering care that is responsive, continuous and
of appropriate quality (meeting guidelines and service
standards). We have seen that task-shifting and tasksharing,
including but not limited to increasing the
role and competencies of primary healthcare services
within the system, is likely to be a core strategy
for increasing diagnostic and treatment coverage.
Case management may be an important strategy for
improving integration and coordination of care, and
increasing treatment coverage. The introduction of
evidence-based care pathways, linked to process and
outcome indicators, should help to improve adherence
to healthcare quality standards, and allow transparent
monitoring of treatment coverage and effective
treatment coverage.
This overview defines the agenda for this World
Alzheimer Report:
We will
1 conduct a scoping review of recent research
evidence on the role of primary care within the
dementia healthcare system. This will include
evidence regarding the effectiveness of primary care
services in the detection and diagnosis of dementia,
and in the provision of continuing care. We will also
assess evidence on strategies and interventions
to enhance the quality of care provided by primary
healthcare services. Finally, we shall seek to identify
any studies that compare aspects of the quality of
care provided by non-specialist versus specialist
services, against the criterion of ‘non-inferiority’,
that is that the processes and outcomes achieved
should be at least no worse than those achieved by
specialist services – a critical justification for taskshifted
care.
2 conduct a scoping review of recent research
evidence regarding the effectiveness of case
management, wherever it is located within the health
and social care system, with respect to outcomes
for people with dementia and their carers, and
evidence for improved efficiency of delivery of health
and social care.
3 conduct a scoping review of hospitalisation
of people with dementia seeking to clarify the
extent of and reasons for hospitalisation, the
associated harms, the excess healthcare costs, the
effectiveness of approaches to avoid hospitalisation,
and reduce harm and improve outcomes for those
who are admitted.
4 review the latest evidence on palliative and end-oflife
care for people living with dementia, updating
the review that we conducted for the 2013 World
Alzheimer Report1.
5 define outline healthcare pathways for people living
with dementia for relatively well-resourced HIC, and
less well-resourced LMIC settings. For selected
HIC (Canada, South Korea, Switzerland) we will
propose and compare two model pathways, one
based on a specialist model of care, and one on a
more task-shifted/task-shared counterfactual, with
more roles performed by non-specialists, estimating
the increasing costs of care from 2015 to 2031,
accounting for projected increased in the numbers
of people living with dementia, and a projected
increase in diagnostic coverage from 50% to 75%.
For selected LMIC (China, Indonesia, Mexico, South
Africa), we shall assume that, currently, dementia
healthcare is provided for only a small proportion
of people, using a HIC model of specialist care. We
will then estimate the increasing costs from 2015 to
2031, assuming that the increased coverage (from
5% in low income countries and 10% in middle
income countries, to 50%) is achieved through
implementation of task-shifted care pathways, as
recommended by the World Health Organization
Mental Health Gap Action Plan (mhGAP).
This agenda is, we believe, highly relevant to the future
of dementia healthcare, worldwide.
Table 1.1
Queensland University of Technology Clinical Practice Guidelines and Care Pathways for People with Dementia Living in the
Community76
Health and social care systems around the world share
three key challenges
• Improving the coverage of care
• Improving the quality of care
• Achieving the first two objectives, while limiting,
and rendering affordable, the costs of health and
social care in the context of population ageing
These challenges can only be met by increasing
the cost efficiency with which care is delivered, and
developing future-proof, sustainable financing models.
Coverage and equity of access should be important
considerations throughout. Policy decisions regarding
the scope and ambition, and the design and delivery of
services for people with dementia, should be evidencebased.
Economic models need to be developed to
guide policy decisions, indicating the incremental costs
of scaling up different service models. These will vary
between settings, depending upon the cost of the
service (driven mainly by staff costs), existing coverage
levels, and the nature of cost savings where these are
to be anticipated.
The multidisciplinary work group established by
the Alzheimer’s Foundation of America and the
Alzheimer’s Drug Discovery Foundation to review
evidence for screening implementation and to evaluate
the implications of routine dementia detection for
healthcare redesign called for an effort to “Define
‘ownership’ of dementia in the layout of health care”. In
their view
“From the standpoint of health care delivery, initial
screening for cognitive impairment is most practical
in the primary care setting... The best setting for
further diagnostic evaluation and comprehensive
management is unclear, however... The workgroup
encourages systematic consideration of the
respective roles of primary and specialty care in the
long-range management of dementia patients, as
part of the work of the National Alzheimer’s Project
Act implementation plan. The discussion should
include consideration of primary care–specialty
care partnerships, specialized chronic care
manager roles within primary care, and research
on identifying specific subgroups of patients
and families who require ongoing complex or
specialized management.”
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