Background
The prevalence of dementia is increasing dramatically with population aging. Dementia, a class of neurodegenrative diseases, is characterized by progressive deterioration and decline in cognition and functioning. In late stages of dementia, the person is completely dependent on care providers. Although 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 burden of suffering [
2]. In recent years, increased attention has been paid to the need for better end of life and palliative care for persons with dementia. The European Association for Palliative Care (EAPC) white paper on palliative care for persons with dementia affirmed that because dementia is a terminal condition, with care focused on maintaining and improving quality of life, palliative care is appropriate for dementia [
3].
A palliative approach includes attending to comfort needs, psychosocial needs, spiritual needs, symptom management, and advanced care planning. 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].
Literature on end of life care and dementia in LTC is emerging, particularly in the areas of advance care planning [
7,
8] and pain and symptom management [
2,
9], with less research about psychosocial and spiritual aspects of palliative care.
There is some evidence of suboptimal palliative care for persons with dementia in LTC homes [
2,
10]. In their synthesis of evaluations of programs to improve palliative care in LTC homes, Goodman and colleagues concluded that “for people with dementia living and dying in care homes uncertainty is an inevitable and integral part of end of life care” [
27,
11]. Uncertainty means that it is difficult to predict death or recognize when someone with dementia is nearing end of life. Additional challenges for staff and families include lack of recognition of dementia as a life-limiting illness and the high prevalence of comorbid conditions in end stage dementia [
2,
11,
12].
Emerging evidence indicates that comprehensive programs that include staff training and tools to support practice change can improve end of life in LTC homes [
11,
13,
14]. This literature also highlights the importance of a holistic palliative approach that attends to the psychosocial and spiritual needs of staff and families as the resident dies and in their bereavement [
15]. Better understanding of staff and family experiences of end of life and end of life care of persons with dementia in LTC homes is essential for implementing holistic palliative care programs. The purpose of this study was to describe family and staff experiences of end of life and end of life care of persons with dementia in LTC homes. Specifically, we explored how care near the end of life is provided, what facilitates this care, and challenges experienced by staff and families.
Method
This descriptive qualitative study was conducted as a sub study during baseline data collection for a multi-site investigation of a program to enhance end of life care in LTC homes [
16]. The research was approved by five university Research Ethics Boards. The study was conducted in four LTC homes in four Canadian provinces. The homes have between 50 and 284 beds and between 14 and 58 deaths per year. Two have segregated dementia units.
Multiple focus groups were conducted at each LTC home. Four focus groups were conducted with relatives of residents of the LTC homes, one at each site. Family participants were recruited through a combination of flyers, email letters, posters, and through the Family Councils of the LTC homes. Thirteen staff focus groups were held (3 or 4 in each LTC home). Staff were recruited through information sessions at staff meetings and posters in the LTC homes inviting staff to participate. All participants provided written informed consent.
Focus groups lasted between 30 min and about an hour and were audiorecorded and transcribed verbatim. The interview guides prompted discussion about end of life practices in the LTC home; compassion and comfort in end of life care; staff comfort with providing end of life care, including barriers, facilitators, and learning needs; and family expectations of end of life care. Staff focus groups included discussion of experiences talking about end of life with residents and families, while family focus groups discussed experiences talking with staff about end of life. Participants were asked about the impact of dementia as the various topics were discussed.
Thematic analysis [
17] was conducted beginning with reading and rereading the transcripts and preliminary discussion of the data (LM, GT, LV). Initial data coding, collating codes into emergent themes, and comparison of findings within and between staff and family focus group transcripts, was conducted by the first author, followed by discussion of and confirmation of themes and discussion of the meaning of findings by three authors (LM, GT, LV).
Discussion
Close intimate relationships between staff and residents were seen as vital for providing end of life care and overcoming challenges related to the person with dementia’s diminished communication ability. These findings have implications for implementing palliative approaches to end of life care for persons with dementia in LTC homes. The person centred care approach that is advocated in dementia care continued to be relevant at end of life. Relationships, valuing people with dementia, and treating people as individuals are core tenants of person centred care [
18] and were evident in the
knowing the resident and
they are all human beings themes. This is consistent with the principles of palliative care and the European Association for Palliative Care (EAPC) white paper on dementia [
3]. However, there are varying opinions about the value of a palliative approach in advanced dementia care [
4]. Efforts to adopt palliative care approaches should build on commonalities between good palliative and end of life care and the person centred care approaches that are already used in LTC homes [
5,
6]. When implementing palliative care with persons with dementia in LTC homes, training and education can help staff to see the link between end of life care practices and the person centred care approaches they value and are already using.
Pain management is notoriously challenging with persons with dementia, particularly at the end of life [
2]. Pain and agitation are common among persons with dementia at the end of life, and pain interventions are underutilized [
2,
9,
19]. Staff and families thought that intimate knowledge of the person with dementia made it easier to know when a dying person with dementia was in pain and respond to signs of pain, agitation, or distress. Health care aides were confident about recognizing pain. The close relationship between the health care aides and residents, the health care aides’ intimate knowledge of the person, and their ability to recognize subtle indicators of discomfort and distress should be leveraged to improve pain management. However, inadequate acknowledgement and support of health care aides’ ability to detect pain and advocate for residents is a barrier to improving pain management in LTC [
20]. Health care aides’ opinions are frequently dismissed, and they are not included in case conferences where pain management is discussed [
21]. Implementing comprehensive palliative care programs such as the Gold Standard Framework in Care Homes can result in improved collaboration between nursing staff and health care aides [
13], potentially paving the way to incorporating health care aides’ intimate knowledge of dying residents with dementia in their pain management.
The amount of time that a person with dementia lives in a LTC home varies by jurisdiction from months to several years [
22]. In Canada length of stay at time of death in LTC homes is decreasing [
23]. This trend may impact end of life care for residents with dementia. In this study, staff indicated that when there was a shorter length of stay, they did not feel the same connection to and knowledge of the needs, preferences and essence of who the dying resident is.
The advantages that close relationships and intimate knowledge bestow on end of life care come at a cost for staff, especially for health care aides. This is consistent with previous research where staff described family-like relationships and grief associated with end of life care of persons with dementia [
24,
25] and points to the importance of supporting staff grief and bereavement [
15]. However, previous research has identified issues of inadequate support for staff related to grief and emotional needs [
24‐
27]. The close relationships between staff and residents with dementia are not acknowledged when residents die and there is not enough time for staff to grieve [
25]. Similarly, health care aides in a previous study received support in their grief from their peers but not from supervisors [
27].
Administrators and supervisors recognized the need to support staff after residents died. Managers’ concern about staff wellbeing after residents die supports feasibility of increasing support from supervisors. End of life education and support needs vary depending on staff role [
28]. Supervisors who are aware that health care aides may be less likely than other staff to view the person with dementia as “already gone” prior to death may be better able to support their grief and purposefully check in with and acknowledge grief when a resident with dementia dies.
Supporting staff as residents deteriorate and after their deaths is an important part of end of life dementia care [
15]. Some LTC homes had rituals to acknowledge the death of a resident; rituals that could play a role in acknowledging and supporting staff grief, such as memorial photographs, having a staff honor guard when the resident’s body leaves the building, and memorial services. These practices and others, such as providing emotional support through regular discussions about recent deaths, have been identified as positive [
29,
30]. However, for some staff, rituals in the LTC home were insufficient and it was important to be able to attend the deceased resident’s funeral or visitation. This was rarely possible. While resources are limited in LTC homes, supporting staff grief and need to participate in funeral rituals would be consistent with and demonstrate value for the relationships staff form with residents with dementia.
Several writers have discussed death as “hidden” in LTC homes [
27,
31]. This aspect of the culture of LTC homes is relevant to our findings about the impact of death on surviving residents with dementia in LTC homes and family need for information about the illness trajectory of dementia. Consistent with recent research, staff and family participants identified unmet support needs for residents with dementia when a fellow resident died [
32]. Posting a memorial name or photograph was seen as inadequate, especially for residents with dementia. The ceremonial marking of a resident’s death by placing a rose at their dining table and praying at a meal shortly after the resident died seemed to be meaningful to staff and seen as positive for residents. Long term care homes should consider adapting and implementing this practice.
Helping families to understand the trajectory of decline and death in dementia is important in LTC homes. Family recognition of dementia as a terminal illness is associated with better resident comfort at end of life [
33]. Family participants seemed to understand dementia as a terminal illness. However, they did not understand the trajectory of decline of dementia and some wanted to know what death would be like. Relatives of persons with moderate to severe dementia living in LTC homes have been found to misunderstand the terminal nature of dementia, the trajectory of decline, and what death would be like, even after the disease process has been explained to them [
31,
34]. In recent research, bereaved relatives indicated that they would have appreciated receiving verbal and written information about the course of dementia and end of life [
35]. Thus, there is a need to provide information in a variety of formats and repeatedly, and for staff to convey openness to answering questions about decline and death.
Some family participants perceived staff discomfort with answering [
8] questions about death and the illness trajectory, consistent with previous findings [
36]. These perceptions are likely accurate; staff reported being uncomfortable answering families’ questions about decline and death. Health care providers’ limited knowledge of the death process and the dementia illness trajectory have been identified in the literature [
37] and LTC home staff have attributed their reluctance to discuss end of life with relatives of persons with dementia to lack of confidence [
26]. Additionally, in LTC homes, uncertainty about when death is imminent for residents with advanced dementia is common [
11]. Together, these findings support a need to provide staff with education about the trajectory of dementia, the challenges of recognizing when someone is dying, and the death process.
Limited skills for discussing emotion-laden topics or limited understanding of the therapeutic value of such discussions may also play a role in staff discomfort answering families’ questions and discussing death. Staff may benefit from knowing that coming to understand the dementia illness trajectory relieves families [
38]. End of life education for health care workers should include communication skills training and practice talking to relatives about decline and death of a person with dementia. Understanding that grief and distress are common for family of persons in the late stages of dementia [
15,
35] may enhance staff’s ability to respond to families. There is some evidence that such approaches have been effective in palliative care settings [
39].
Methodological strengths of this study include the number of focus groups and diversity in the sample with respect to the LTC homes and the staff participants. LTC homes were purposefully sampled to include for-profit and not-for-profit homes, in different provinces, which vary in terms of funding and regulations for LTC homes. Diversity in the staff sample with respect to professional designation and job category meant that various staff perspectives and experiences were included. The inclusion of family and staff participants allowed us to compare their perspectives. The sample may be biased towards people who strongly value end of life care and this may be associated with some characteristics that were reported to be associated with experiences and challenges in the provision of end of life care.
The findings suggest opportunities to support end of life care for persons with dementia in LTC homes. It is important to acknowledge and support the value of relationships, the time it takes to establish relationships, and the grief experienced by staff who provide care. Health care aides’ intimate knowledge of persons with dementia should be incorporated in interprofessional pain management interventions. Residents with dementia are not immune to grief and loss when other residents die. Further research about their needs is required. Existing rituals within LTC homes may need to be enhanced. Families want and need information about the dementia illness trajectory and end of life. Education and training for staff to be confident in providing this information and answering families’ questions is needed.