Dementia

Barriers to accessing
caregiver services
The barriers to accessing caregiver support services are the same
as those identified for accessing dementia-appropriate health and
social services in general. These barriers include negative attitudes
to diagnosis and treatment, lack of appropriately trained health
workforce and of the infrastructure to scale up services, low helpseeking
because dementia is considered part of normal ageing or
because of stigma, lack of public policy initiatives, and lack of funds
for dementia services, research, and training.
Caregivers also face additional barriers when seeking services for
themselves. In many LMIC, no support services are routinely
available for family caregivers. Even in high-income countries there
are barriers to access and uptake, including lack of recognition of
the caregiving role, poor understanding of dementia and cultural
influences on caregiving.
Role recognition
Family members often do not consider themselves caregivers, so
they do not look for services that can support them in that role.
Those who seek such services often find them to be scattered,
uncoordinated and not appropriate to their needs (342). Health
insurance policies often do not provide coverage for caregiver
support services. Along with fragmented care systems, lack of
knowledge about resources, and the emotional burdens of care
provision, caregivers for people with dementia encounter the
stigmatization of the disease. Caregivers and policy-makers alike
need to recognize the importance and dignity of the caregiver role.
Lack of knowledge
Poor literacy, including dementia literacy, also contributes to lack of
access to services (343–346). The range of skills required for adequate
health literacy (e.g. understanding medical terminology and
information clearly enough to be able to follow directions, recognize
and respond appropriately to symptoms) are developed over a
lifetime. When caregivers’ health literacy is low, their attitudes and
behaviour are affected.
Cultural approaches to caregiving
In most Asian cultures that have been studied (such as Chinese,
Korean and Malaysian), it is common for families to take full responsibility
for older adults with dementia. This may be coupled with a
reluctancy to discuss dementia and related caregiving issues with
people outside the immediate family due to fears of “losing face”.
This often results in refusal of outside help even when it is likely to be
much needed (345–347). This approach to coping results in less
social and emotional support for caregivers. It part of a vicious circle
whereby being unable to acknowledge the disease for what it is
leads to an inability to access services.
Strengthening caregiving
Given the important role of caregivers, both in maintaining the
quality of life of the care recipient and in providing the most costeffective
model of long-term care, appropriate and accessible
support structures are vital.
A three-fold approach to strengthen caregiving includes:
• Information, resources and training: Information needs
include understanding the characteristics and course of the
disease and what resources are available to families, along with
training in how to care for people with the disease and how to
prevent and deal with behavioural symptoms.
• Support and respite: There are a number of strategies for
supporting caregivers, including counselling and long-term
support, dyadic interventions, caregiver retreats, respite care
(described in chapter 4), and family meetings that include the
person with dementia. It is urgent to implement strategies that
are successful and replicable, focusing on both best practices
and promising ones.
• Financial support: Caregivers need financial assistance in
order to do their jobs well and to sustain them for the long term.
A few models are in place worldwide such as the long-term care
insurance in Japan (Box 3.6). In addition to caregiver benefits,
disability benefits for the person with dementia and social
pensions also have a part to play, as described in chapter 3.
None of the steps, however, is simple. Cultural factors, linguistic
issues and health literacy concerns must be considered when
educating family and friends about dementia and care options.
These issues are more commonly found in LMIC, although
ethnic and racial minorities in high-income countries face similar
challenges (348).
The predicted future shortage of human resource capacity must
also be addressed, alongside an expansion of services that are
known to be effective and culturally appropriate and that are likely
to be accessed. Given the insufficient number of specialists in
LMIC, dementia care will require the engagement of community
health workers, primary care doctors and nurses and family
caregivers all working as a team. This will necessitate a pathway
to care and support that improves access and communication
and that is flexible and adaptable to the changing needs of people
with dementia and their caregivers (158). The Republic of Mauritius,
as one example, has recently launched a caregiver’s strategy to
support both formal and informal caregivers (Box 5.3).
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