Dementia

LMIC country sites one third to two thirds of people with dementia
lived in multigenerational households that included children under
the age of 16 (3) (Table 5.1). Larger households were associated
with lesser degrees of caregiver strain (268), probably because care
responsibility could be shared and, in principle, the main caregiver
could benefit from respite (see the situation in Nigeria in Box 5.1).
Demographic, social and economic trends will inevitably impact on
the extended family kinship system in LMIC, and the availability and
willingness to provide care (see also Chapter 3). Future cohorts of
older people may have smaller networks of family caregivers (269).
What do family
caregivers do?
In the home setting, family caregivers are confronted with multiple
tasks that evolve throughout the disease process. Typically, the
level of support increases as the disease progresses, starting with
support for instrumental activities of daily living (household, financial
and social activities) and expanding to include personal care
and eventually almost constant supervision. The extent of need and
the types of care needed, and their progression over time, depend
on many factors such as the clinical profile (types and severity of
cognitive impairments and behavioural and psychological symptoms,
which may vary by subtype of dementia), the presence of
comorbid physical and psychological problems, the custom and
habits of the person with dementia, the person’s personality and
significant relationships. Table 5.2 describes symptoms that commonly
affect people with dementia syndrome as the disease progresses
from the early stage through to the late stage (272, 273). It
shows the probable impact of these impairments on the person
with dementia and the changing role of the caregiver. It should be
noted that this is a general description of the course of dementia,
and that symptomatic features will vary considerably from person to
person and within and between the different diseases that result in
dementia. The caregiver’s role will vary accordingly.
What are the motivations
to care?
Much of the literature on caregiving tends to focus on negative
aspects. Strain arises when coping resources are overwhelmed.
Therefore, it is important to document that most family and
friends involved in providing informal care take pride in their role,
and perceive many positives. For some, caring can be rewarding
(274) and can provide a sense of meaning or self-efficacy (275). In
a Canadian study, 80% of a nationally representative sample of
caregivers identified positive factors – including companionship
(23%), fulfillment (13%), enjoyment (13%), providing quality of life
(6%) and meaningfulness (6%) – in association with their role (3).
Affection is a key motivating factor for caregivers of people with
dementia (276). In the EUROFAMCARE study, “emotional bonds” (i.e.
love and affection) were the principle motivation for providing care,
as reported by 57%, followed by a “sense of duty” reported by 15%
and a “personal sense of obligation” reported by 13%. Just 3% of
caregivers in the study said they “had no other alternative” than to
care (265). Another study found that caregiving for a spouse is seen
as a natural marital obligation, and that spousal caregivers may
report positive feelings toward caregiving (277). In many LMIC, filial
obligation or responsibility is reported as being a prime motivator.
In such cases the primary caregiver may be designated according
to the norms of the particular culture. Reports from Africa suggest
that one of the reasons for Africans having many children is that
they view children as a form of social security (278). The care
provided by the children is sometimes seen not just as a mere duty
but as a moral obligation to repay the parents in their old age (279).
In a qualitative study carried out in India, seven caregivers felt they
were doing their duty by looking after their relative with dementia
and six said it was their fate to face such hardships (280).
Dementia care is difficult and requires time, energy and, often,
physical exertion from the caregiver. As the disease progresses
slowly, family members often provide care for many years and are
under high levels of stress for long periods of time. The effects of
high stress levels are intensified by the chronic fatigue associated
with providing long hours of care without periods of relief.
In the late stage, caregivers usually need the assistance of professional
care if the person continues living in the community. This is
particularly so when caregiving requires significant physical input
and when the emotional impact requires respite for caregivers to
enable them to continue in their role for as long as possible.
71