Very little research is focussed on looking after people with dementia at home. The following is a summary of a study carried out between 2005 and 2007 by Adrian Treloar, FRCP, MRCPsych, MRCGP; Monica Crugel Specialist Registrar in Old Age Psychiatry and Dimitrios Adamis, academic Old Age Psychiatrist.
The final, definitive version of this paper has been published as an article in the journal ‘Dementia’ 2009 volume 8, pages 335-347 by Sage Publications Ltd and the full unedited version can be found at http://dem.sagepub.com/cgi/content/abstract/8/3/335
Palliative and end of life care of dementia at home is feasible and rewarding as results from the Hope For Home study show: –
Palliative and end of life care for non-cancer patients is a key priority for the NHS as is the support of the dying, through to death at home. Recent guidelines have highlighted the need to ensure that people with dementia have the same access to palliative care services as others. Even though it is estimated that family carers of people with dementia save the UK over £6 billion a year and 63% of those people live in the community a recent report concluded that the current health and social care systems fail to offer sufficient support.
The definitions of palliative care and end of life care are subject to on-going debate.
Palliative care is used in this study as ‘the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments’. (National Council for Palliative Care. 2006)
End of life care helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support. (Department of Health 2008)
The Hope For Home study
The work to support patients with advanced dementia at home through to death started as a result of carer demand. The service has grown and is strongly valued by carers. At present the service can support fifty people with the explicit agreement that holistic, home-based and palliative care will be provided throughout the progression of the dementia until death. Input consists of regular visits to monitor and adjust medication and care input, to give advice and discuss worries, as well as visits on request for any reason.
The Hope For Home study took the form of an exploratory, retrospective study of patients who died between 2003 and 2006 and had been supported at home until death. It was decided to undertake detailed interviews with the key carers of the first fourteen patients successfully managed at home with the aim of identifying the major factors which make such care feasible.
Findings of the study
Carers were found to be determined and often quite able although nearly all reported some physical health problem. Physical frailty and age did not appear to be a bar to caring, with one frail carer being 91 years old. Some carers had been told by statutory agencies that they would not be able to carry out their intentions as they had no experience of such care and it would be risky or impossible. This kind of advice tended to be ignored and carers went ahead in spite of it.
All but one of the carers thought that caring had helped them to cope with bereavement, and only two had required any formal post-bereavement counselling.
Resources required for caring at home
Carers relied upon a wide range of professional expertise; GPs, district nurses, OTs, social workers, social services carers. Problems with the irregularity of time and change of person visiting were very common, ‘we tried social service carers for six weeks. In that time twenty-one different people came’. One carer finally advertised for paid help after finding all other sources deficient. All the carers in the study felt that Old Age Psychiatry input was indispensable with one carer feeling that it had been the only real source of help.
Carers were asked to rate the usefulness of various pieces of equipment and how easy or difficult it was to obtain equipment.
Indispensable equipment was found to be continence pads and sheets, commodes and wheelchairs. Hospital beds, high chairs, pressure relieving cushions and electric hoist were rated as very useful followed by walking frames, adjustable electric chairs, and toilet/bath/shower aids.
The availability of the needed equipment was variable and depended on the carer’s knowledge and help given by professionals. Several carers had to purchase at least some equipment from their own funds.
Funding and financial control
The study found that home care saved statutory services large amounts of money. It was calculated that the total spend on care provision by health and/or social services on the fourteen patients was £337, 670 whereas the cost of nursing/residential care would have been over £1,034,600.
Many of the carers found it very important that they had financial control of the provision of care staff. There were repeated themes that carers engaged by local authorities and other statutory agencies worked to a set plan and could not vary what they did according to need. These problems were resolved when carers were engaged directly by the key carer of the person with dementia.
Availability of support and services
A repeated theme from the study was the need perceived by carers for someone who would visit regularly, advise and bring in other people. There were repeated concerns about blockages to care and non-availability of help ‘until she got attendance allowance no-one wanted to give any help at all’.
Feeding is a central issue for end of life care dementia. Carers described many techniques for maintaining food intake when patients lost weight. The importance of ‘good nutritious food well laid out’ was stressed. In very advanced dementia patients do stop eating, sometimes for days at a time. In these circumstances carers concluded that patients should not be fought with to eat, if they did not eat for a day or two they usually caught up later.
End of life care and place of death
There was a strong feeling among the carers that hospital was to be avoided with all those whose relatives had died at home saying they would not have wanted them to go to hospital. The few carers whose relatives spent the last few days of their life in hospital only saw this happen because, for example ‘he went in because of distress at the last minute’. These patients were included in the study as the intention was that they should remain at home.
The study found that 6 of the 14 patients died in hospital. This might be seen to invalidate the notion that care at home is feasible, but the time in hospital before death was short and the patients had no access to the specialist out of hours service advice which might have prevented such admissions.
Overall evaluation by the carers
All the carers said they were glad they did what they did and 100% said they would do it again. Eleven of the fourteen stated that they thought that what they did was so important they would have risked their own health to do it. Two of those who did not agree with this were parents of young children.
The Hope For Home study has demonstrated that managing advanced dementia through until death at home is both feasible and associated with good outcomes. It has been found that grief is greatest for carers at the moment of separation when someone with dementia goes into a nursing home placement. The results of the study suggest that the extra work and involvement of hands on care may alleviate rather than simply delay that grief.
The study produced repeated themes from the carers who were interviewed which suggest that as with palliative care for cancer, dementia care requires expertise and support specific to that illness. Services as they are currently set up do not respond coherently or appropriately to that need. Existing old age psychiatric services for dementia should be skilled up and developed to provide the same kind of palliative care services as cancer receives.
The mix of advanced disability as well as challenging behaviour caused by dementia, and the need to continue to adjust psychotropic medications suggests that Old Age Psychiatry has a key role to play in this field. Old Age Psychiatry services were particularly strongly valued by the carers in the study.
The study also highlighted the fact that home care can be cost effective, saving money over the costs of institutional care. Of course, home care should be provided because it gives better care, but the additional fact that it saves money ought to make services that support advanced dementia at home a priority.