Meaningful connections in dementia end of life care in long term care homes

Lynn Mccleary,Paulette Hunter,Sharon Kaasalainen,Tamara Sussman,Lorraine Venturato,Genevieve N Thompson,Abigail Wickson-Griffiths

doi:10.1186/s12888-018-1882-9

Abstract

BackgroundMost persons with dementia die in long term care (LTC) homes, where palliative approaches are appropriate. However, palliative approaches have not been widely implemented and there is limited understanding of staff and family experiences of dying and bereavement in this context.MethodThis descriptive qualitative study explored family and staff experiences of end of life and end of life care for persons with dementia in LTC homes. Eighteen focus groups were conducted with 77 staff members and 19 relatives of persons with dementia at four LTC homes in four Canadian provinces.ResultsThree themes emerged: knowing the resident, the understanding that they are all human beings, and the long slow decline and death of residents with dementia.DiscussionIntimate knowledge of the person with dementia, obtained through longstanding relationships, was foundational for person-centred end of life care. Health care aides need to be included in end of life care planning to take advantage of their knowledge of residents with dementia. There were unmet bereavement support needs among staff, particularly health care aides. Persons with dementia were affected by death around them and existing rituals for marking deaths in LTC homes may not fit their needs. Staff were uncomfortable answering relatives’ questions about end of life.ConclusionsLongstanding intimate relationships enhanced end of life care but left health care aides with unmet bereavement support needs. Staff in LTC homes should be supported to answer questions about the trajectory of decline of dementia and death. Further research about residents’ experiences of deaths of other residents is needed.

Highlights

Most persons with dementia die in long term care (LTC) homes, where palliative approaches are appropriate
Health care aides need to be included in end of life care planning to take advantage of their knowledge of residents with dementia
Sample Between 4 and 5 family members attended each family focus group, resulting in 19 family participants. Their relatives had been living in the LTC home for an average of 4.5 years (SD = 4.5; range, less than 1 to 13 years)

Summary

Introduction

Most persons with dementia die in long term care (LTC) homes, where palliative approaches are appropriate. Community-based care for dementia is more common than it once was, in North America most people with dementia die in long term care (LTC) homes [1]. Lack of access to palliative care is a problem for persons with dementia, who are less likely than people with cancer to be referred to palliative care despite a similar. The focus is on quality of life of the person with dementia and their family or informal carers [4]. It is congruent with the person centred approach of good dementia care [5, 6]

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