Monday, January 15, 2018

WORLD REPORT 2016

Improving healthcare for people living with dementia. Page 1


Executive summary

Findings from the reviews

Models of healthcare delivery
Healthcare for people with dementia needs to be:
Continuous: treatment options, care plans
and needs for support must be monitored
and reviewed as the condition evolves and
progresses.
Holistic: treating the whole person, not single
conditions, organs or systems, and mindful
of that person’s unique context, values and
preferences.
Integrated: across providers, levels of care, and
health and social care systems.

Currently, healthcare systems struggle to provide
adequate coverage of diagnostic services, and
care is too often fragmented, uncoordinated, and
unresponsive to the needs of people with dementia
and their families.
In high income countries, dementia healthcare
systems tend to be highly specialised (care is
provided by specialist physicians - geriatricians,
neurologists and psychiatrists), from diagnosis
onwards, with very little formal recognition of the
role of primary care services, or allocation of tasks
to this sector. This is probably also true for low
and middle income countries, where diagnostic
coverage is low.
As the numbers of people affected and the
demand for services increase, it is unlikely that full
coverage of dementia healthcare services can be
attained or afforded using the current specialist
care model.

The role of primary care

Dementia is currently under-detected, underdiagnosed,
under-disclosed, under-treated and
under-managed in primary care.
When primary care physicians do take
responsibility for dementia care, evidence suggests
that the care has similar outcomes to that provided
by specialists.
Recognition of dementia in primary care can be
boosted by in-service education and training.
Indicated screening using cognitive tests can
support timely diagnosis. However, general
screening of all older attendees cannot currently be
recommended.
In most settings, dementia diagnosis is not
explicitly recognised as being within the capacity of
non-specialist services. Nevertheless, we identified
several successful examples of memory clinics
established in primary care, and run by primary
care physicians supported by nurse practitioners.
The post-diagnostic phase bridges from the
‘diagnosis well-made’ to a system of continuing
care in the context of declining function and
increasing needs for care and support.
The potential benefits of the full range of postdiagnostic
support activities have yet to be
evaluated.
Primary care services struggle to deliver high
quality continuing care for people with dementia,
even in systems where their role has been made
more explicit.
There have, as yet, been no evaluations of case
management located within primary care.
Attention needs to be given to the optimal roles
of specialists within a more task-shifted and
task-shared healthcare model. Task-shifting is
defined as delegating selected tasks to existing
or new health professional cadres with either less
training or narrowly tailored training. This may
involve shifting tasks from higher- to lower-skilled
health workers – for example, from a neurologist
to a primary care physician – or creating new
professional roles, so tasks can be shifted from
workers with more general training to workers with
specific training for a particular task – for example,
from a primary care physician to a dementia case
manager.
Task-shifted models of care require specialist
support. Specialist services will need to take on
a more prominent role in training, mentoring and
supervising non-specialists, with explicit referral
guidelines and pathways.

Care coordination, through case
management

The effectiveness of case management remains
unclear as research is lacking. Positive effects of
case management (reduced or delayed transition
into care homes, better adherence to care
standards, and reduced unmet needs) were found
in some studies.
There is a lack of evidence regarding the impact
of case management on the efficiency with which
healthcare is delivered, mainly because most
studies do not report on the relevant outcomes.


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World Alzheimer Report 2016

Effects of case management on hospitalisation
were generally not significant and the absence of
evidence on cost-effectiveness studies is striking.
Evidence to date suggests that effectiveness may
be enhanced when there is:
A manageable caseload for delivering
interventions with the required intensity;
A clear role definition with adequate preparation
and training; and
Empowerment of the case manager to access
and coordinate care across providers and
sectors.
Future evaluations need to include a
comprehensive set of process and outcome
measures, which should include service
utilisation and cost, effective components of case
management, as well as clinical and quality of life
outcomes for the person with dementia and carer.

Hospital care

People with dementia are more likely to be
admitted to general hospital than people of
similar age and medical infirmity, particularly for
falls-related accidents and injuries, urinary tract
and respiratory infections, and chronic disease
complications that might have been averted with
better management in the community.
People with dementia are less likely to be admitted
for interventional procedures that could enhance
quality of life, including cataract surgery, vascular
catheterisation and stenting, cholecystectomy, and
cancer care.
In high income countries the costs of healthcare
are substantially higher for people with dementia
than age-matched controls, with a substantial
proportion of costs arising from hospitalisation.
The process of hospital care is more complicated
for people with dementia, with significant cost
implications. They have longer hospital stays, and
require more nursing resources than others.
People with dementia are particularly vulnerable
to harm and poor outcomes in the context of an
admission, particularly from hospital acquired
infections, delirium, agitation and falls, all of which
impact adversely on length of stay.
Mortality rates are exceptionally high during
admission and somewhat higher after discharge.
However, the high mortality rates may reflect, in
part, a tendency to admit people with dementia to
hospital at the very end-of-life.
More research is need into service and system
level interventions to avoid hospitalisation,
specifically of people with dementia. Community
interventions have been mostly ineffective,
although there is more evidence to support
multidisciplinary assessment and management,
than case management.
Emergency Departments are often the portal
of admission for people with dementia, and
represent a last chance to prevent unnecessary
hospitalisation. The literature highlights the need
for comprehensive multidimensional geriatric
assessment, including detection of dementia and
delirium.
‘Hospital at home’ refers to services provided by
health professionals in the person’s own home,
in situations when inpatient hospitalisation would
otherwise be necessary. While we identified several
examples of such services being established for
people with dementia, we could find no formal
evaluations.
Reducing rates of hospitalisation for people with
dementia will likely require community-based and
outreach services that are resource-intensive and
maintained over relatively long periods of time.
Costs then would be shifted from acute hospital
to community health and social care, which would
require adjustments to budgets and resource
allocation.
For people with dementia who are admitted
to general hospital, there is a tension between
prioritisation of task-centred acute care for the
cause for admission, and the acknowledged need
to provide person-centred dementia care.
Advocated actions are mainly at the systems
level, focusing on managerial and workforce
development; providing an appropriate care
environment; fostering a positive care culture;
changing attitudes; and cultivating a better
understanding of the challenges for the person with
dementia, for carers, and for inpatient healthcare
staff.
Most reviews and reports emphasise that simply
introducing a mental health liaison service, or a
dementia specialist nurse, or a special dementia
care unit will not suffice. These need to be properly
integrated into the wider hospital and health
service management structure.
Concern is expressed in all recent reviews at
the lack of rigorous evaluation of services that
commissioners are advocating and providers
are implementing. Well-conducted large scale
randomised controlled trials, providing clear
evidence of cost-effectiveness are largely lacking.

Palliative and end-of-life care

Concerns have been raised regarding the lack of
access for people with dementia to good quality
end-of-life care, specifically specialist palliative
care services, although there is some evidence,
from some high income countries, that the situation
may be improving.

Improving healthcare for people living with dementia. Page 3

The applicability of a palliative approach to
dementia care continues to be debated, given
the lack of consensus regarding the definition
of ‘advanced’ dementia and the lack of a clearly
demarcated ‘end-of-life’ phase.
There may be no specific palliative phase; the
specific goals of dementia care can include,
at various phases, and to different degrees,
prolonging life, improving function, and achieving
comfort (palliation).
People with dementia should be encouraged and
enabled to exercise their autonomy in options
for future care, consistent with their values and
preferences, and it should be emphasised that
the palliative care agenda is focused upon their
choices, and their quality of life, rather than cost
savings.
Early discussions with family carers that
acknowledge the likely future loss of decisionmaking
capacity and their increasing role as proxy
decision-makers would assist carers in assuming
this role, and enhance their ability to judge the
person with dementia’s best interests.
Calls have been made for a better systematisation
of palliative care for people with dementia, with
structured care pathways, good practice supported
by evidence, and identification of appropriate
outcomes to allow the effects of interventions to be
measured.
More clarity is needed regarding the division of
responsibilities among different health and social
care disciplines.
There is also a policy gap regarding end-of-life care
for people with dementia. The focus is on living well
with dementia, with relatively less attention to the
complex medical, social and ethical management
of the physical decline that leads to death.
There is an urgent need for more research, specific
to the dementia field, regarding: preferences of
people with dementia, and how these can be
elicited; the implementation, benefits and harms
of advanced care planning; and the relative costs
and benefits of palliative care assessments and
services in the more advanced phases of the
condition. Current good practice guidelines are
almost entirely based upon expert opinion and
consensus.

Dementia care pathways and the health
system context

Reviews of the care for people with dementia in
Canada, China, Indonesia, Mexico, South Africa, South
Korea and Switzerland have identified key challenges
to the implementation of better healthcare pathways for
people with dementia:
In most of the countries, the low levels of
awareness and training of healthcare staff
contribute to low rates of diagnosis, as dementia is
considered a normal part of ageing. For those who
are diagnosed, the lack of professional knowledge
about treatment and care options may also deny
people access to post-diagnostic care, treatment
and support.
Access to healthcare for people with dementia
remains a problem for some parts of the population
in most of the countries. Access can be restricted
as result of the financing arrangements (particularly
in low and middle income countries, some people
have inadequate or no public health cover at all,
and, even in high income countries, the out-ofpocket
payments can be too high for those in low
incomes). People from some ethnic groups and
people living in care homes have more difficulties
accessing appropriate care in most countries.
Geographic inequities (poor availability of care in
rural and remote areas) remain a problem even
in high income countries, although there are
examples of the use of technology to improve this.
In all the countries except for Canada and South
Africa, primary care does not have a gatekeeping
role and people are able to access specialist care
directly, which may result in people accessing care
that is unnecessarily expensive, or even accessing
the wrong specialists. The ease of access to
specialist care, combined with a perception that
primary care is of lower quality, may be important
barriers to the development of task-shifted care
pathways.

The costs of implementing a taskshifted
dementia healthcare pathway

We estimated the costs of implementing a dementiaspecific
healthcare task-shifted pathway in in Canada,
China, Indonesia, Mexico, South Africa, South Korea
and Switzerland. The pathway was based on the
literature reviews conducted as part of this report and
it involves:
Diagnosis: mostly carried out in primary care by
primary care physicians and case managers, with
some people referred to specialist care.
Initial treatment and post-diagnostic support:
an assessment for anti-dementia drugs, postdiagnostic
support package, and carer training and
support).
Continuing care: anti-dementia medication reviews,
management of behavioural and psychological
symptoms and case management.
End-of-life care.
A proportion of people, those with more complex
dementia and co-morbidities, would continue to

access a specialist care pathway.

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World Alzheimer Report 2016

We compiled unit costs for each of the countries,
complemented with international estimates when local
unit costs were not available. Results from costing the
pathway in each of the countries show that:
The costs of the task-shifted pathways are
relatively low compared to overall healthcare
spending. We have estimated that the cost of the
pathway in 2015, per person diagnosed, would
range from $39 per year in Mexico (or $3.90 per
person with dementia), to $2,113 in South Korea
($1,057 per person with dementia).
The prescription costs of anti-dementia drugs
are very high in some of the countries (China,
Indonesia, South Africa and South Korea),
representing more than 80% of the cost of the
pathway. This is in part because of drugs remaining
under patent, lack of consolidated purchasing,
and reluctance to use generic medicines. This is
aggravated in some countries by doctors using
additional prescription fees to supplement their
incomes. If, by 2030, the use of generic medicines
was the norm, the cost of the task-shifted care
pathway would be 40% lower than that of the
specialist pathway in all three HIC, making
increased coverage more affordable.

Conclusions and recommendations

Four main themes emerged from the reviews
conducted for this report:

1. Systematisation of care processes

Systematisation should include:
standards of care at different phases of the
condition;
role specification (‘who does what’);
clear referral indications and pathways; and
relevant process and outcome indicators to be
measured.

2. Managing complexity
Much more effort needs to be applied to the
effective management of complex multimorbidities
(multiple health problems) in dementia healthcare,
in particular chronic physical health conditions.
There is evidence that chronic physical health
conditions are undermanaged for people with
dementia, with missed opportunities to improve
function and avoid acute crises leading to
hospitalisation (for example, nutrition, hydration,
falls, infection, delirium and medication
management).

3. Need for more research
Researchers should work with policymakers
and providers to ensure that the innovations that
they propose to evaluate are policy relevant, fully
implementable in the context of the research
evaluation, and capable of being taken to scale in
the event that effectiveness and cost-effectiveness
are demonstrated.

4. Coverage, costs and efficiency
Increasing the coverage of dementia care will
increase total costs to the health system, since
more people will be being treated. This, coupled
with the increasing numbers of people living with
dementia, is likely to be a key driver of trends in
healthcare costs.
In this context, a move towards a less specialised,
more task-shifted model of care can be advocated
on two grounds:
First, mobilising the untapped potential of the
non-specialist primary care workforce can
alleviate resource constraints, enabling scaling
up to take place (especially critical for low and
middle income countries).
Secondly, this strategy is likely to optimise
productive efficiency. Under either scenario, the
unit costs of care are assumed to fall.
Over time, as tasks are shifted successfully to the
primary care level, commissioners will be able
to shift budgets from secondary to primary care
and per capita costs of care may fall. In reality
though, the main benefits of task-shifting may be
the unlocking of resource capacity to meet the
increasing demand.
There is also the possibility that task-shifted and
task-shared care may be of higher quality; more
local, more holistic and personalised, and more
comprehensive, integrated and continuous.
To improve coverage using a task-shifted approach
requires that health systems provide universal
health coverage, good access to care for those in
rural areas and from disadvantaged groups and,
crucially, that primary healthcare has a central (and
gatekeeping role) in health systems.
Scaling up dementia care would seem to be
affordable, in principle, in all countries included in
our review.
The cost of anti-dementia drugs had a large
impact on the total cost of the dementia healthcare
pathway where low cost generic versions of
acetylcholinesterase inhibitors and memantine
were not yet available.


We need to focus on achieving high coverage of
dementia diagnosis and continuing care, both to
ensure access to current evidence-based treatments
and support, and to create systems and platforms
with the capacity to deliver, with equity, much more
effective treatments in the future.

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