Caregivers of people living with dementia at home are often bundled into the one box of “caregivers”. However, research shared at the ICAD 2010 in Hawaii today has shown the importance of treating the adult children carers differently from the spousal carers.
Adult children who care for their parents with dementia have higher levels of burden than spouse caregivers. Their lives have been interrupted by dementia and felt bound by duty to endure the burden of caring. They can fearful of the future and and the likelihood of increasing burden as the disease progresses to its natural conclusion in death of their loved one.
Spouse caregivers expressed more intense grief than the adult child caregivers. This makes sense when we consider the lifetime of commitment in a relationship that is usually on an equal footing and now they find it has changed irrevocably. They have lost companionship, roles, freedom hopes for the future and the intimacy that can be so satisfying in later life. They are robbed by the disease and now find themselves in a carer-dependent relationship.
It raises issues for us in terms of how we support these carers. Other presenters today showed how vulnerable caregivers are to depression and other forms of stress and illness. Support programs are effective in reducing the burden caregivers feel and the depression they experience, and can have a good effect of reducing the disturbing behaviour that can cause such distress for caregivers.