This report by the Alzheimer’s Society is drawn from data collected by means of a survey completed by carers of people with dementia who live in a care home, care home managers and care home stuff. It places this in the rapidly changing policy and service development context.
The report is designed to be of use in campaigning for better quality care for people with dementia. It is written with the objective of convincing policy-makers that most residential care in England is being provided for people with dementia and that it needs to be consistently good quality.
Training, resources and the culture of care do not reflect this reality. Rather than presenting an entirely negative picture of care homes, the report explicitly acknowledges that some homes are excellent and argues that higher standards are possible for the rest. It laments the general low level of expectations among all concerned.
Home from Home draws on three sets of survey data and a small number of focus groups. The findings from relatives of people with dementia living in care homes reveal their concerns about whether their relatives have enough to do during the day. Furthermore, many reported that their relatives are not able to go outside or into the homes’ gardens.
Care home staff reported that they enjoyed helping residents with activities and would like to do more of this. While only a small percentage of possible respondents replied to the survey [16% of care workers who were sent a survey responded], overall a total of 1,503 care home staff replied. This provides valuable data. For instance, care staff reported that the three things they found most difficult about caring for people with dementia were: not being able to make themselves understood to residents, dealing with aggressive/violent/abusive behaviour and understanding residents’ difficulties or frustrations.
Care home staff were concerned that staffing levels were such that they could not provide help with activities and good quality care as much as they would like. The report suggests that one way of addressing this is for staff to prioritise activities that are especially important to an individual resident. Working with a care plan can help establish what a person values and to set priorities. A range of helpful resources is given to promote ideas about activities and their management.
The nature of the relationship between staff and the family of a care home resident was regarded as important by all but was a problem for about a quarter of the relatives responding to the survey (1,859 in total). This sizeable minority felt that they were not involved in decision-making as much as they would like and that they did not get enough information or updates about their relatives’ care and treatment.
Care home staff also found that working with relatives had its problems at times, although more than half reported that they enjoyed this aspect of their work. Some had experienced relatives as being disruptive and creating extra work, or being over-critical. In the main, staff said they understood relatives’ perspectives and feelings, such as guilt and anxiety.
About half the homes [nearly 800] responding to the survey have a group for relatives and friends. Homes had tried to set one up in other cases but they did not always work or last. The report argues that such groups are important ways to share information, to develop relationships and to improve communication. It suggests that care home staff should talk early-on to relatives about how they wish to be involved in the support of their relative and about possibly problematic areas, such as risk-taking. There are many practical suggestions for care home staff, including coverage of the evidence and theoretical base, in a new book by Bob Woods and colleagues.1
Supporting care home residents with dementia is a complex task requiring multiple skills. This survey of relatives, care home managers and care home staff enables us to see different perspectives. The views of care home residents are even more important, of course. The main thrust of the report is that care home staff need, want and deserve training in dementia. Clearly, life is not as simple as that and the report is set in the context of the emerging Dementia Strategy in England.
While this is likely to have many priorities, it is risky to see care homes as separate from other forms of support. This means that while early or timely recognition of dementia may be a goal for primary care in the community, recognition of dementia among care home residents may be equally honest, worthwhile and achievable. If more staff were better trained in dementia care then residents’ needs arising from dementia symptoms would be better diagnosed and assessed. Likewise, care homes may need to be brought in from the cold, in terms of their staff and residents having equal access to advice and support from specialists. This may be of particular help to staff in responding to residents who have behavioural problems.
It is estimated that over a third of people with dementia live in care homes and that two-thirds of care home residents have dementia. The Alzheimer’s Society calls for mandatory training in dementia for all care home staff. This survey provides substantial evidence that care home staff would appreciate the support that training provides. The care home staff responding to the survey set out a number of areas where they feel that their skills need developing and seemed to be aware that there are resources outside the world of care homes to which they do not have access.
This report can be set in the context of social care for people with dementia and their carers more generally. A further study from the Alzheimer’s Society reports the views of people with experiences of dementia of wider social care in England, Wales and Northern Ireland.2 This definition of social care included residential and nursing care homes. The report notes that many people do not understand what social care is and why it is so important for people with dementia and their carers.
It is to be hoped that social care has a high profile in the emerging Dementia Strategy and investment follows.
As with the study of care homes, the lack of training in dementia for care staff was regretted by those responding to this consultation. This was seen to contribute to a limited understanding among staff of how to properly care for a person with dementia. It added to carers’ worries and could infringe the dignity of people with dementia. It could also prompt early admission to care homes.
Other issues picked up in this wider report include the limited access of people with dementia to assistive technology, such as alarms, emergency cords, sensors and detectors. These may promote independence and give carers peace of mind.
Similarly, access to social care support was a problem for many people who were not eligible until their circumstances were critical. This was stressful for carers, many of whom also reported a lack of information about what was available, adding to their concerns. The report found evidence that direct payments for carers provided much appreciated and tailor-made support packages but that opportunities to access direct payments were not widely available.
They could, for example, be used to provide support for younger people with dementia who might wish for opportunities to be active and enjoy community facilities with support.
Both reports set the problems they have identified in the wider debate over charging for and the funding of social care, which is likely to intensify this year, not just in the context of the Dementia Strategy.
Jill Manthorpe, Social Care Workforce Research Unit, King’s College London
1 Woods B, Keady J and Seddon D (2007), Involving Families in Care Homes: a relationship centred approach, Jessica Kingsley Publishers, www.tinyurl.com/5oplv6
2 Alzheimer’s’ Society (2007), Social Care: a Lifeline with People with Dementia and their Carers www.alzheimers.org.uk