Family carers need support during all stages of dementia

People who are caring for family members with dementia need professional support at all stages of the condition. This might for instance be advice on how to deal with the patient's behavioural problems, or information about how dementia progresses and the care options available. The longer the dementia goes on, the more the family carers feel the restrictions on their own social activities. This has been reported by researchers from the Netherlands Institute for Health Services Research (NIVEL) and Alzheimer Nederland in The Open Nursing Journal.

The increasing numbers of people suffering from dementia will not be reflected by an increase in professional care in the future. This means that family carers will have to deal with even more issues surrounding the condition. However, almost all family carers come up against problems when caring for their relative with dementia, both in its early stages and later on. Many of them need additional professional support.
Behavioural changes
In the early stages, carers often have difficulty with the behavioural changes in the family member who is suffering from dementia; they often do not want to see their relative admitted to a nursing home or care home and they want more information about the condition and about the professional care options in their region. In the later stages of dementia, carers are more affected by loneliness, often have less contact with family and friends and the care often becomes physically too much of a burden.
Coaching and supporting
“Case managers, GPs or other caregivers who are involved therefore have to coach and support the family carers throughout the entire progression of the condition,” says Professor Anneke Francke, the programme leader at NIVEL. “In the early stages of dementia, that support will largely consist of information about the condition and the care available in the region. In later stages, they’ll also have to look at practical support, so that family carers can keep on caring without ending up being socially isolated themselves.”
Over 1400 family carers who are looking after people with dementia filled in a questionnaire for the study about their problems and the need for support. Almost half of them (49.8%) were looking after a family member who had been suffering from dementia for one to four years; in 44.2% of the cases it had been for longer than four years, and in 6% the family member had been showing symptoms of dementia for less than one year. This is the second measurement in a monitoring study recording the situation every two years. Alzheimer Nederland is using the conclusions to help represent its cause and to improve the care for dementia that is available at the regional level.

Funding and cooperating partner
Alzheimer Nederland