Palliative care needs of people with dementia

Overview

'Lighting up Lives' investigated whether the palliative care needs of people with end stage dementia living in Dumfries and Galloway were met. Palliative care is an approach which aims to improve the quality of life of patients and their families by preventing and relieving suffering through identifying and treating physical, emotional and spiritual needs.

There are around 64,000 people with dementia in Scotland, of whom almost 18,000 will be in the end stages, where they may be unable to walk, verbally communicate or do anything for themselves.

Care homes

Physical needs

The majority of the informal carers interviewed (mainly relatives) were satisfied with the standard of physical care provided for their relative in care homes, yet 30% felt that pain was an issue. Care home managers said there was a lack of medical information provided by GPs and hospitals, which made it difficult for them to manage the residents effectively.

Only half of the care homes surveyed provided any training on dementia, the quality and quantity of which was variable. The approach to medical input in the homes was generally reactive, however care managers felt better supported when the GP had a regular visiting pattern.

Emotional needs

  • Both care home staff and informal carers thought that anxiety and boredom were the most common emotional states of the residents and informal carers rated happiness as the least common state.
  • The training provided to care home staff on how to communicate with people with dementia was limited.
  • Only 20% of informal carers felt that their relative’s social needs were met and just under half said they were either not asked or could not remember being asked for information on the person, including their hobbies and interests. Care home managers identified a large gap in providing appropriate one-to-one activities for people with end stage dementia, such as stimulation involving the senses.

Spiritual needs

Over half of the homes said they had an input from local churches, however where services were held they were poorly attended and unsuitable for people in the end stages of dementia. Care homes managers felt that ministers and elders did not know how to cope with people with dementia and had little understanding of the illness. Care managers admitted that there was a gap in meeting spiritual needs.

The needs of relatives

Worryingly, over half of the care staff interviewed expressed a negative image of relatives, for example feeling that relatives expected too much from them. Over half of the informal carers did not feel they had sufficient information about their relative and the majority had not been regularly involved in a review of the person's care, even though many wanted to be.

Care at home

Most of the carers involved who cared for the person with dementia at home felt able to meet their physical, emotional and spiritual needs, thus providing a more palliative approach to care. The carers viewed the positive elements of their role as the uniqueness of the relationship between them and the person with dementia and allowing the person to remain in his/her own home.

However, carers also reported feeling tired, lonely and experiencing a loss of freedom. They said they needed more training to undertake their role successfully, such as in moving and handling, and more appropriate respite.

Hospitals

Challenges identified in a psychiatric assessment unit were people being overmedicated on admission, a lack of support in the community to enable discharge and difficulties in meeting religious and spiritual needs.

In NHS intermediate care the physical needs of the people with dementia were met, however there were issues in developing a wider palliative care approach and problems in retaining and training care staff.

In acute care, informal carers and care home staff viewed hospital admission as being detrimental to the health and well-being of the person with dementia. Issues such as the experience being frightening for the person with dementia and difficulties with ensuring that the person with dementia was well fed and hydrated were reported.

Recommendations

  1. All care home staff should receive training in both dementia and palliative care. This should extend beyond physical care to encompass social and spiritual needs.
  2. Care home staff should seek information from informal carers on their relative and should offer them the opportunity to be involved in the care of their relative, if they want to be. Such involvement should be facilitated and supported by care home staff.
  3. There should be a better flow of information between care homes and the medical profession.
  4. Nursing staff in acute care should receive more training in dementia care to reduce any negative impact of hospital admission.
  5. Further research is needed to determine if the gaps in need found in Dumfries & Galloway are prevalent in the rest of Scotland.

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