These associated but contrasting publications are the result of a European partnership project and a North Wales study, both of which explored relationships between family carers, people with dementia and care-home staff, from the point of admission to the home, to the end of life of the person with dementia. Both explore the emotional complexity of this triangle of relationships and suggest practical steps to ensure that all the parties involved are supported, especially the person with dementia. The book features the Welsh and European projects and their main findings, provides a round-up of other studies connected to the theme of relatives and care homes, and has a chapter on critical end-of-life issues. For those seeking to familiarise themselves with the general field and the current state of related research, the book will be an invaluable resource. The video features examples of good practice in sustaining the crucial on-going relationship of family members, staff and people with dementia, and has an attached training package that contains key points and checklists of issues and practical matters to address. Care-home managers may well want to use the book as a starting point for reflection and then follow up the issues with their staff through the video and training package. Taken together, the whole package offers an extremely useful introduction to the topic and should stimulate much constructive thinking in homes on their current practice, complementing their current positive dementia care training and practice.
The key issues raised are: the transition from living at home to living in a home; the sharing of care; the maintenance of trust in the family-staff relationships; and practical ways of making family involvement work. Much thought has gone into the issue of transfer of responsibility from the principal home carer to the ‘professionals’ and how this can be eased in ways which take account of people's likely vulnerability at this stage. Feelings of guilt and inadequacy often plague family carers, whether spouses or children of people with dementia, when they have to give up caring for the person at home. These feelings will be mixed with anxiety about the choice of home they have had to take and the quality of care and personal attention staff will be able to offer. Powerful interviews with carers reveal that the point of separation does not necessarily bring undiluted feelings of relief, but often feelings of loneliness and emptiness. Family carers speak of their need to be near their person, even on a daily basis, and the difficulty they experience in handing over the feeding and more intimate daily living tasks to the professionals.
The book provides examples of converting these senses of guilt, need and loss into practical ways of supporting the person with dementia as they make the transition and as they acclimatise themselves to the new situation. Preliminary visits for the family carer and their person to get to know the home and staff, full explanations (verbal and in writing) concerning the home's routines and activities programme, clear indications as to the family's contact person and a simple newsletter about what is going on are all fairly obvious requirements, though not always on offer. More imaginative approaches are also suggested. Homes can provide a regular meeting for relatives, some with and some without the staff present, giving opportunities to discuss matters of current concern and possibilities for future development. Family members can be encouraged to get involved in the home's activities and outings so they get to know other residents, relatives and staff. Homes can encourage family members to help feed their person, though not all homes are ready to invite this level of involvement and many are actually discouraging on the grounds that it disrupts established routines. Above all, relatives can be invited to take on responsibility for introducing their person to the care-home staff and residents. They can do this through creating photo-collages, wall displays, memory boxes and life-story books, all of which will help to ease their person's social integration and enable a more personal approach to their care.
The needs of care staff for recognition and support in work which can often be challenging and distressing are also fully addressed. A sense of partnership with, and support from, family members can give extra meaning to their work and relationships and assist them in providing the person with dementia with the highest possible quality of life. The family carer can give practical information concerning their person's needs and preferences, insight into what makes him or her happy and comfortable, and suggested topics of conversation likely to trigger positive recall and a stronger sense of self. When the family carer is willing to be a voice for the person who is silenced by dementia, he or she can increase the likelihood of successful work by the paid carer. At an emotional level, a relationship of trust can enable staff members to share problems when things are difficult and to receive thanks and appreciation when things are going well with someone who is, after all, very important to both parties. The thought-provoking chapter in the book on end-of-life issues mentions the very real emotional needs of care staff when someone they have looked after faces death, and how the partnership with family members can be helpful in what often amounts to bereavement. Both the book and the film urge the importance of providing training and support for staff in how best to work constructively, not defensively, with relatives and to value their involvement.
It is very encouraging to read about and see examples of good triangular relationships where the family carer who so wishes has a place in the continuing care of their person in a care or nursing home. In homes which take this relationship seriously and factor it into their day-to-day practice, it is clear that there are significant improvements in quality of life for all parties concerned. The evidence in the book from the European study conducted by the authors indicates that best practice is still not common and that many a family carer continues to feel excluded by the fortress mentality of the care home where their relative is living. Both the book and the film with its training package are valuable spurs to care homes to review their policies and implement enlightened change.