Dementia

Dementia: A public health priority
> CHAPTER 4 > DEMENTIA HEALTH AND SOCIAL CARE SYSTEMS AND WORKFORCE
than the primary caregiver. The term “respite care” is used to cover
a diverse range of services. Respite care can take place in the
home of the person with dementia, in a day-care centre, in the
community (e.g. attending a social event) or in a residential setting.
It may vary in terms of who provides the care (trained or untrained
staff or volunteers). Respite care may also vary in duration – ranging
from a few hours to a several weeks – and may involve daytimeonly
care or overnight care. Respite care may be planned or, in an
emergency, unplanned.
The aim of respite care is to give the primary caregiver respite
from his or her caregiving responsibilities and hopefully ameliorate,
to some degree, the stresses associated with being a caregiver.
Respite services should also benefit the person with dementia.
High-quality respite can provide opportunities for engagement and
socializing (186) (Box 4.4). Evidence regarding the effectiveness
of respite care is limited. A review of three randomized controlled
trials showed no benefit on any outcome for caregivers (187).
However, a host of methodological problems in available trials were
identified, indicating the need for further research in this area.
In the WHO dementia survey, 5 out of 8 (62.5%) high-income
country respondents reported that the country provided respite
services, compared with 3 out of 22 (13.6%) LMIC country respondents.
However a further three respondents from LMIC reported
that respite is available from a private provider or from the local
Alzheimer organization. Furthermore, the cost of respite services
is generally subsidized in high-income countries, whereas the full
cost of respite is more likely to be borne by the recipient in LMIC.
Residential care
Despite a shift in priority in high-income countries to community
service provision, residential care is still a significant feature of longterm
care for people with dementia, and it may be the most appropriate
and effective way of meeting someone’s needs and providing
a service of choice when community support (formal and informal)
is insufficient.
Seven out of eight (87.5%) survey respondents from high-income
countries reported that their country provides support (via funding
or resources) for residential care, compared with 8 out of 22
(36.4%) respondents from LMIC. Even when present, many a times
the number of facilities is insufficient. For example, Poland reported
there is just one facility designed for people with dementia in the
country. All but one of the countries with government-supported
residential care facilities reported that they are regulated by a
government department. However, only three countries reported
that the regulations were sufficient. The inadequacy in regulations
is reportedly due to limited funding to enforce them, too few prosecutions
of facilities occur that do not follow them, and too few
regulations specific to dementia care. At the time of the survey, the
Dominican Republic was developing regulations.
A recognition of the need to improve the standard and quality of
residential care has seen the emergence of alternative models of
care, some of which have influenced the philosophy and practice
of care provision in facilities in some high-income countries.
Among these, the work of Tom Kitwood (190, 191), who coined
the term “person-centred care”, is well known. Kitwood was critical
of what he termed “the old culture of care” which reduces
dementia to a biomedical approach and ignores subjectivity (the
lived experience). For Kitwood, the old culture of care is taskdriven
and focused on medical approaches to care. In contrast,
person-centred care is value-driven and focuses on the well-being
and empowerment of people with dementia and their families.
Other models, such as dementia care mapping, adopt the principles
of person-centred care. Dementia care mapping is an
assessment tool and philosophy designed to improve personcentred
care. The findings of a clustered randomized controlled
trial with 325 participants from residential care facilities in Australia
compared outcomes for residents assigned to one of
three groups: person-centred care, dementia care mapping, or
traditional care. Residents assigned to dementia care mapping
and person-centred care showed improvement in agitation
compared with participants receiving normal care (192).
Palliative care
Palliative care has been defined by WHO as “an approach that
improves the quality of life of patients and their families facing the
problems associated with life-threatening illness, through the
prevention and relief of suffering by means of early identification
and impeccable assessment and treatment of pain and other
problems, physical, psychosocial and spiritual” (193). It should
include support and bereavement counselling for families (194).
Evidence exists that the care of people with dementia, especially
towards the end of their lives, is less than optimal (195). Palliative
care stands well with the aims of person-centred dementia care
and is beneficial in relation to caring for people with dementia. Palliative
care, and particularly end-stage palliative care, should ideally
be managed by clinicians or others who have knowledge and experience
of the issues that are likely to occur (including pain, refusal of
food and fluids, inability to swallow and, for the caregivers, bereavement
and adjusting to a non-curative approach to treatment) (196).
Organizing long-term care services
Both LMIC and high-income countries are faced with the increasing
need for provision of long-term care for the ageing population
generally, and for people with dementia more specifically.
High-income countries have seen rapid escalations in the cost of
long-term care, whether provided by the state, by the private sector
or by families (197). The demand for long-term care services is set
to rise sharply with the increase in the ageing population. This is
generating intense debate about the funding and form of future
provision. Currently, the scale, form and quality of long-term care
provision in high-income countries is variable, suggesting that
there is considerable scope for sharing and learning from different
national experiences (198, 199).
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