Challenges of Caregiving for
Dementia Patients Explored in New World Alzheimer Report
In Europe, 85% of couples (one
with Alzheimer’s or other dementia, the other being their caregiver)
lived on their own
Sept.
21, 2009 - All over the world, the family
remains the cornerstone of care for older people who have lost the
capacity for independent living due to dementia, according to a report
released today by Alzheimer’s Disease International in the 2009 World
Alzheimer Report. Today is World Alzheimer's Day.
In developed countries, many of
which have comprehensive health and social care systems, the role of
families, and their need for support, is often overlooked. In developing
countries, the reliability and universality of the family care system is
often overestimated.
Dementia projected to double
every 20 years by 2009 World Alzheimer’s Report
Sept.
21, 2009 – World Alzheimer’s Day was greeted with bad news this morning
- more than 35 million people worldwide will have dementia next year,
according to the new 2009 World Alzheimer Report by Alzheimer’s Disease International.
There are already about 5.3 million Americans living with Alzheimer’s
disease, the most common cause of dementia, according to the Alzheimer’s
Association.
Read more...
All people with dementia
experience at least some degree of functional disability. This does not
imply that they should all be regarded as needing care. Needs for care
were assessed by the interviewer for all participants in the 10/66
Dementia Research Group’s population-based studies in Latin America,
India and China.
In most sites, between 50 and
70% of those with Alzheimer’s and other dementias were rated as needing
care, and most of those needing care needed ‘much care’.
Needs for care varied by level
of dementia, with 30% of those with mild dementia, 69% of those with
moderate dementia, and 88% of those with severe dementia needing much
care.
The 10/66 Dementia Research
Group’s multicenter pilot study included 706 caregivers of people with
Alzheimer’s and other dementias in Latin America, India and China.
The EUROCARE study included 280
spouse caregivers from 14 European countries (C22).
In both studies, and across
nearly all settings, most caregivers were women.
In Europe, 85% or more of
couples (one having Alzheimer’s or another dementia, the other being
their caregiver) lived on their own.
In contrast, people with
Alzheimer’s or another dementia in the 10/66 pilot studies typically
lived in large households, with extended families; one quarter to one
half of households comprised three generations, including children under
the age of 16 years.
Living arrangements for people
with dementia, and the characteristics of their caregivers were also
assessed in the 10/66 Dementia Research Group’s population-based
studies, where 1,345 people with dementia were studied in 11 sites in
Latin America, China and India.
Living alone or with a spouse
only was very uncommon – the norm was to be living with adult children
and/or children-in-law, often also with children under the age of 16.
However, in urban China over a
third of people with dementia lived with their spouse only. In all sites
other than rural China, the overwhelming majority of caregivers were
women, usually daughters or daughters-in-law caring for a parent. Only
in China was the spouse quite commonly identified as the main caregiver.
A recent review of the
literature identified 27 studies, overwhelmingly from high income
countries, that provided information on time spent caring.
Caregivers of people with
Alzheimer’s and other dementias spent an average of 1.6 hours daily
assisting with core personal activities of daily living (including
washing, dressing, grooming, toileting, eating). Including time spent
assisting with instrumental activities of daily living (such as cooking,
shopping, laundry, household finances) increased this figure to 3.7
hours, and when general supervision was also taken into account the
average care input was 7.4 hours per day.
Consequences of caregiving
The negative consequences of
caregiving have been widely studied. However, most family and friends
who provide informal care take pride in their role, and perceive many
positives.
In Canada, 80% of a nationally
representative sample of caregivers of people with dementia were able to
identify positive aspects when asked to do so. These included
companionship (23%), fulfilment (13%), enjoyment (13%), providing
quality of life (6%) and meaningfulness (6%).
Nevertheless, caregivers of
people with dementia also experience high levels of strain,
psychological morbidity and, possibly, impaired physical health. In the
USA, more than 40% of family and other unpaid caregivers of people with
dementia rate the emotional stress of caregiving as high or very high.
Interestingly, in low and middle
income countries, while being part of a large household attenuated
slightly the strain experienced by the main caregiver, traditional
extended family care networks provided little protection; levels of
caregiver strain were, in general, still as high as those seen in the
European EUROCARE project.
Many studies have reported very
high levels of psychological morbidity among caregivers of people with
dementia, 40% to 75% in EUROCARE, with the same range of prevalence
observed in 21 of the 24 10/66 pilot centres.
A recent systematic review
identified 10 studies that assessed the prevalence of major depressive
disorder among caregivers of people with dementia using structured
clinical interviews, which varied between 15 and 32% (C29). In six of
these studies the prevalence of major depression was compared with that
in a control sample, with the prevalence in caregivers being 2.8 to 38.7
times higher.
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Sept.
21, 2009 - All over the world, the family
remains the cornerstone of care for older people who have lost the
capacity for independent living due to dementia, according to a report
released today by Alzheimer’s Disease International in the 2009 World
Alzheimer Report. Today is World Alzheimer's Day.