Bob Woods is Professor of Clinical Psychology of Older People at Bangor University, Wales, UK, and co-director of the Dementia Services Development Centre, Wales. Bob is also the author of two JKP titles: the book Involving Families in Care Homes, and a DVD trainging package, Partners in Care. Here, he shares some thoughts on the importance of family involvement in care homes for people with dementia.
My interest in this topic dates back over 20 years now, to a time when people with severe dementia often ended their days in a psychogeriatric ward in one of the many mental hospitals then still open. I worked as a clinical psychologist in an area where such patients would be sent to a run down Victorian ‘lunatic asylum’, so inaccessible that their devoted spouses could only visit once a fortnight, for an hour. The debilitating guilt experienced by these spouses, and other relatives, was striking.
Then came the opportunity to plan a new style of dementia care home, right in the heart of the catchment area, and the positive effects on relatives’ guilt and strain were palpable. They visited more often and felt considerably more involved. But there were tensions too; relatives were often dissatisfied with staff, and staff felt that relatives were more of a problem than the residents. It became clear that the relationship between staff and relatives needed just as much attention as that between staff and residents.
Over the years, expectations have changed, care home environments are much improved, but this dynamic remains. It is especially pertinent for residents with dementia, as these are the older people most likely to enter a care home because the family carer is unable to continue to cope at home. Relatives have so much to contribute, in relation to their detailed, expert knowledge of the person, filling in the gaps left by fading memory. But for the relative visiting, remaining in contact and maintaining a relationship with a person with severe dementia may be no easy matter.
We now appreciate that guilt feelings and strain may be strong at any stage of the care-giving journey, and that the admission to a care home does not signal the end of the ‘care-giving career’, just a change in responsibilities. We also know that residents’ quality of life tends to be higher in homes where family involvement is higher. It is these factors that prompted the projects which led to our book on this topic, and to our DVD-based training materials which aim to improve communication between staff and relatives.
It is encouraging to now see more homes taking up an approach which values the input of families, and does not see them as ‘problems’. Nothing can remove the pain of losing a loved one to dementia, but supportive and understanding staff can make a real difference to the experience.
Copyright © Jessica Kingsley Publishers 2010.