Dementia

GBD region
(green = imputed)
Basic
ADL
Combined
ADL
Australasia 2.0 3.3 2.6
Asia Pacific, High Income 2.0 3.6 2.6
Oceania 3.6 4.6 1.2
Asia, Central 1.2 2.7 3.3
Asia, East 3.6 4.7 1.2
Asia, South 1.3 2.7 2.6
Asia,
South-East
1.3 2.7 2.6
Europe, Western 1.1 3.5 3.3
Europe, Central 2.1 4.4 3.4
Europe, Eastern 2.1 4.4 3.4
North America, High Income 2.1 4.0 2.8
Caribbean 3.0 3.0 2.1
Latin America, Andean 2.9 2.9 2.6
Latin America, Central 1.9 1.9 3.1
Latin America, Southern 2.9 4.4 2.6
Latin America, Tropical 2.9 2.9 2.6
North Africa / Middle East 1.0 1.4 2.8
Sub-Saharan Africa, Central 2.0 3.6 2.6
Sub-Saharan Africa, East 2.0 3.6 2.6
Sub-Saharan Africa,
Southern
2.0 3.6 2.6
Sub-Saharan Africa, West 2.0 3.6 2.6
All 2.0 3.6 2.6
Supervision
Table 5.4 Global Burden of Disease region-specific figures of
informal care inputs (hours per day) (7)
Interventions for
caregivers
The accumulating evidence on the personal, social and health
impacts of caregiving has generated intervention studies aimed at
decreasing the stress of caregiving.
The dominant theoretical model guiding the design of caregiver
interventions is the stress / health model (259). According to the
model, primary stressors on the caregiver depend on the degree of
cognitive impairment of the person with dementia, the frequency of
problem behaviours by the care recipient, the number of hours per
week required to provide physical assistance, and the need to
navigate the health care system. Secondary stressors on the caregiver,
which may be less obvious to care providers, include missed
work opportunities and family conflict. Both primary and secondary
stressors may lead to perceived stress and ultimately morbidity or
mortality. The model thus recommends a multi-faceted intervention
scheme for caregivers. This includes a focus on the person with
dementia so primary stressors can be reduced (e.g. reduction of
disruptive behaviours), caregiver knowledge regarding social support
and resource availability so adaptive capacities can be bolstered,
and approaches to caregiver behaviour so behavioural responses to
stressors can be improved.
Many studies, mainly conducted in high-income countries, attest to
the wide-ranging benefits of caregiver interventions. There are
several systematic reviews and meta-analyses (283, 303–307). A
recent review evaluated the evidence on the efficacy and effectiveness
of psychological and psychosocial interventions (307). These
studies cover a wide range of intervention programmes such as
caregiver information and education, psycho-educational training
(e.g. for self-management of moods), training in coping skills (e.g.
implementing assistive technologies), support groups, counselling for
primary caregivers and family (face-to-face, telephone or videolink),
psychotherapy (e.g. cognitive behaviour therapy), respite and multicomponent
studies. The review concluded that non-pharmacological
treatments “emerge as a useful, versatile, and potentially cost-effective
approach to improve outcomes and quality of life for both the
person with dementia and caregiver”. Table 5.5 lists brief descriptions
of the types of intervention considered.
• assistance with basic ADL, such as eating, dressing, bathing,
toileting, grooming, and getting around (sometimes referred to as
personal care);
• assistance with combined ADL, including also IADL, such as
shopping, preparing food, using transport, and managing personal
finances;
• supervision to manage behavioural symptoms or to prevent
dangerous events.
Although the effects are generally moderate and variable, several
studies have shown that interventions can have a positive effect on
caregiver strain, depression and subjective well-being (283, 304, 329,
330), with psychoeducational interventions having the greatest effect
on reducing depression in one review (283). Interventions may play an
important and helpful part in mitigating distress in some caregivers.
They are likely to be most effective when they are initiated after
careful evaluation of the caregivers’ needs, resources and ability to
access existing services (331), and with careful attention to how
service needs vary across the continuum of dementia decline.
Table 5.4 shows that caregivers spend 3.6 hours per day on
average assisting with activities of daily living (basic ADL + IADL
care inputs).
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