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Elderly people with dementia : Caregivers’ experience when the need for legal protection is considered

Dominique Giroux, Maude Carignan

Research framework : Several studies report that support for seniors with loss of autonomy is mainly provided by caregivers. Following a diagnosis of dementia, questions about safety and the need for legal protection are commonplace. Throughout the course of the disease, caregivers are called upon to play various roles and this can be difficult, especially if they don’t have the knowledge required to meet these needs.

Objectives : A study was conducted to document the difficulties experienced by caregivers following a competency assessment and to create a better understanding of their reported expectations.

Methodology : Five focus groups were conducted with three categories of participants : 1) seniors ; 2) caregivers ; 3) members of seniors’ rights organizations.

Results : The results of this work highlight three main difficulties : 1) the fluctuation of symptoms ; 2) the acceptance of illness and the role of caregiver ; 3) an increased burden and the feeling of exhaustion. Another important element also emerged : caregivers feel that they are not sufficiently informed to fully assume their role. This reality influences their perceived burden since they often find themselves helpless in the face of a situation for which they are not well prepared.

Conclusions : Health and social services professionals need to be made aware of this reality to better prepare the caregivers of people diagnosed with dementia so that they can be more proactive as the disease progresses along its course.

Contribution : To our knowledge, no similar study has ever been done.