Most hospices and palliative care programmes in the USA serve people with dementia; lack of awareness, need for respite care and reimbursement policies are the main barriers to providing this care
- Correspondence to: Tony Ryan
University of Sheffield, Samuel Fox House, Northern General Hospital, Herries Road Sheffield S5 7AU, UK;
Implications for practice and research
▪ Providing palliative care to people with dementia is perceived as effective and is an increasing feature of care at the end of life.
▪ A lack of awareness about the role played by palliative care providers in end-of-life dementia care is a major barrier to its usage.
▪ Providing support to families is viewed as the most important aspect of palliative care work in end-of-life dementia care.
▪ More research about the scope and nature of palliative care for people with dementia is required.
It is estimated that just under 700 000 people are living with dementia in the UK, with prevalence expected to increase by over 150% by the middle of the 21st century.1 About 100 000 people with dementia die each year in the UK, and end-of-life experiences for people with dementia and their families are characterised by institutional forms of care, often in acute hospital settings.2 This article addresses the growing issue of access to palliative care for people with dementia. It seeks to determine the extent of palliative provision within hospice and non-hospice settings across the USA and also explores barriers and priorities to the provision of such services.
The study utilises a two-stage survey. The first, a telephone survey of almost 800 programme directors, was aimed at establishing the proportion of providers who had experience in supporting people with dementia. The second stage, a web-based survey of non-hospice organisations, explored barriers to the provision of palliative care for people with dementia as well as describing the nature of this provision. Within the web-based survey, respondents were given the opportunity to describe experiences of providing palliative care to people with dementia using open-ended questions.
Hospice as well as non-hospice organisations reported that they had provided care for a person with dementia in the last 12 months (94% and 74%, respectively). This is encouraging and may reflect a trend towards a widening of availability and access to palliative care for people with dementia. However, perhaps the more helpful findings within this study were derived from the qualitative analysis of facilitators and barriers to promoting palliative care for people with dementia among non-hospice programmes. A number of successful strategies were identified, including the nature of the workforce, collaborations with other organisations, organisational features (including access to hospice services and being small in size), the provision of education to providers and relatives and the nature of referrals. Respondents also rated the importance of a number of barriers to providing palliative care to people with dementia and their families. These tended to cluster around external factors such as family and referring healthcare professional awareness about palliative care for people with dementia, whereas the capability of the organisation in being able to manage behavioural and psychological problems was viewed as less of a barrier. The most important patient needs were identified by respondents as working closely with families and managing behavioural symptoms. Respondents tended to agree that palliative care for people with dementia is effective.
The authors note a number of limitations, including the exclusive nature of the sample frame, response bias, the potential for incomplete information being available to respondents and the lack of individual patient data. The authors do not, however, temper claims made within the conclusion that nearly all hospice programmes are now providing such services to people with dementia. Such assertions may be overstated here, partly because of limitations already noted and also because directors of programmes may not have had access to individual-level data. Furthermore, the data presented are heavily dependent upon individual views of directors who may be inclined to protect the reputation of the programme or have a limited perception of the barriers to palliative care. This may have resulted in respondents being more likely to view barriers to palliative care for people with dementia as external rather than internal organisational factors.
Nevertheless, this study provides a useful contribution to existing knowledge about progress in this area of practice. It would appear that the number of services of this nature may be increasing in the USA at least. The position in the UK is less clear. The National Audit Office3 reported on a dearth of available resources for people with dementia living in the community at the end of life. The challenge for policy makers and practitioners is to achieve high-quality end-of-life care in a variety of settings, not just the hospice sector.4 The study is also helpful in drawing attention to the priorities of programme directors. Programme directors reported palliative care for people with dementia as being effective. This view is consistent with other published evidence.5 Programme directors also reported work with family carers (around burden and the provision of information) as being of a high priority. Again, this would correspond with a growing literature on the need for family members to have trusting relationships with providers at the end of life for the person with dementia.6 7 This is important evidence in demonstrating that those leaders in the practice arena are taking the issues seriously. Many barriers still exist, however, and further research is required if sound evidence is to improve the quality of such services still further.