Carers’ health

Caring for a person with dementia can be a long-term commitment and many familycarers reported many years of caring for their relative 17. If a person with dementiaenters long-term care this may be due to the exhaustion of the carer and their healthmay have been adversely affected. As others have noted, it was often the case thatthe caring role did not cease once the person with dementia had entered long-termcare and this was especially so due to issues surrounding the provision of food.Where food provision was inadequate a carer may continue to provide food for theperson with dementia and regularly come to the home or hospital to provide helpwith eating. While this is to be encouraged where the carer is willing it can also beviewed as a failure of the care system in homes or hospitals if carers cannot leavethe person with dementia with confidence that they will receive an adequate diet.These data illustrate the sheer work involved in supporting many people withdementia to eat and drink. The work extends beyond providing nutrition ormaintaining hygiene. It can be very much part of total support for a person withdementia: maintaining their dignity, responding to their preferences and includingthem in ordinary life. For many carers this involves extraordinary commitments oftime and infinite patience. Most do not appear to see this as out of the ordinary –and are modest about this work. It is work, however, and help with food and drink isoften needed throughout the day and evening and sometimes at night Carers painted a variety of pictures about the impact of caring on their own health and some mentioned the effects on their own eating. For example, one wife observed: I do feel a little less like eating sometimes after preparing and dishing up a meal, and then having to cut up a plateful of food for my husband.Others reported more difficulty, such as heightened anxiety at meals:His inability to cope and irritability at meal times made me lose appetite andenjoyment of food. Meal times because stressful instead of the social affairwe had formerly enjoyed.For some, the stress was more pervasive: It is very wearing having to monitor my mother’s eating habits as she tries to catch me out, hiding food before throwing it away.Finally, a small number reported significant problems not so much with theirrelatives’ eating but other behaviours which affected carers’ own health and diet:I nursed my husband for about 15 months before he was admitted to anursing home due to violence. Towards the end I had to cut my visits down17 Briggs K & Askham J (1999) The needs of people with dementia and those who care for them: a review of the literature Alzheimer’s Society, London 16 to four or five days a week because I was very poorly, lost over 2 stone, stress and very depressed.