Family Caregiving and the Site of Care: Four Narratives About End-of-Life Care for Individuals with Dementia

Abstract

Little is known about end-of-life care for individuals with Alzheimer's disease and other dementias. Four case studies are presented, using data collected by qualitative interviews conducted with family caregivers who were closely involved with end-of-life care for relatives with dementia. The case studies are formatted in two pairs, with one reflecting two deaths occurring at home and the other pair representing two deaths in the nursing home. The cases reveal a range of end-of-life experiences, suggesting that there is not just one "good" path. The extent of care needed, the responsiveness of the individual, the health of the caregiver(s), and the residence and support situations, can all intersect in a variety of ways that make no one scenario the answer for all. Although most people say they would prefer to die at home, in some situations the nursing home can be a satisfactory choice, particularly if hospice is involved. These narrative case studies give the reader insight into the variety of the end-of-life experiences and suggest the environment should be considered as part of the care provision.

Impact of dementia on informal care: a systematic review of family caregivers’ perceptions

“…Access to useful information about the disease and its evolution was considered essential to caregivers. Acquiring knowledge helps caregivers to better assume caregiving role and prepare them to prevent and deal with specific Positive aspects (only) 5 Habermann et al; 26 Van Gennip et al; 55 Innes et al; 93 Harmer and Orrel 94 Negative aspects (only) 63 Forbes et al; 48 Hemingway et al; 50 Glass; 95 Givens et al 13 Positive and negative aspects (combined) 3 Joosten-Weyn Banningh et al; 23 Jennings et al; 59 Ven et al; 29 29 Appropriate medical counselling, formal support and healthcare professionals support for patients were found to be good resources to overcome caregiving challenges and decision-making processes that rely on caregivers: "Well, for me, what would improve my quality of life mostly is to have better support from healthcare professionals, (…) just keeping him clean is extremely challenging (…)." 30 Caregivers considered good aspects of formal care when the staff "have the knowledge and techniques on how to handle the residents and their behaviours" and "That it was good to see their relatives in a safe, secure and loving environment."…”

Broadening End-of-Life Comfort to Improve Palliative Care Practices in Long Term Care

“…Challenges noted include complexities related to unpredictable dying trajectories, lack of palliative care knowledge or skills among staff, workload demands, and apprehensiveness in talking about dying (Brazil et al, 2004;Johnson & Bott, 2016;Parker Oliver, Porock, & Oliver, 2006;Seymour, Kumar, & Froggatt, 2011;Sims-Gould et al, 2010). Yet much of the empirical work and subsequent practice recommendations to date have been based on staff perceptions and experiences (Brazil, et al, 2004;Cartwright, Miller, & Volpin 2009;Reynolds, Henderson, Schulman, & Hanson, 2002;Johnson & Bott, 2016;Kaasalainen, Brazil, Ploeg, & Martin, 2007;Parker Oliver et al, 2006;Seymour et al, 2011;Sims-Gould et al, 2010;Waldrop & Kirkendall, 2009) with far fewer studies exploring the perspectives of families (Glass, 2016;De Roo et al, 2015;van Soest-Poortvliet et al, 2015;Waldrop & Kusmaul, 2011) and residents (Mathie et al, 2011;Ng, Cheong, Raj, Teo, & Leong, 2016;Goodman et al, 2013;Bollig et al, 2016). This gap is most notable in Canada where only one study could be located that captures residents' and families' views -alongside those of staff in LTC -on death, dying, and end-of-life care (Cable-Williams & Wilson, 2014).…”

Comparison of the experience of caregiving at end of life or in hastened death: a narrative synthesis review

“… Challenge Coping with escalating number and intensity of caregiving tasks, patient’s decline, disruption in routine. Demands consistent with caregiver’s sense of duty and commitment, but achievable [ 26 , 30 , 37 , 38 , 45 , 47 , 48 , 53 – 58 , 60 , 64 ]. Planning and preparation, reconciling one’s own beliefs to help the patient [ 15 , 16 , 68 , 70 ] Threat Events that could affect the patient’s well-being, either internal (caregiver’s own preparedness and resources) or external (availability of services).…”

“…Death allows patient to escape suffering. Escalating need for care results in more clinical resources [ 26 , 36 – 38 , 44 , 46 , 48 , 51 , 53 – 57 , 60 – 63 , 65 ]. Clinicians who would not facilitate hastened death but were supportive in other ways; in retrospect, hastened death seen as right choice [ 15 , 16 , 18 , 19 , 70 ] “I mean it’s so wonderful that you can give someone yourself.…”

“…I mean that’s a real thing to do. And that they’ll let you.” (Sinding, p. 157) Revised goals Reducing hopes for patient’s future, deciding to encourage the patient to “let go” to avoid further suffering, admitting patient needs institution-based care [ 27 , 28 , 30 , 32 – 34 , 37 , 38 , 45 , 46 , 48 , 53 , 56 , 59 – 63 ] Putting own grief or ambivalence on hold to focus on patient’s wishes, reconciling to idea of hastened death as better option than disease trajectory or unassisted suicide [ 15 , 18 , 19 ] ‘I had to realize that this person was no [longer] capable mentally or physically, and I had to take over the role of [parent] just like you do, first it was like a 6 year old and then a 5 year old.’ (Clukey 2008, p312) Spiritual beliefs Taking comfort in a larger force to supply strength or determine patient’s fate, taking comfort in an afterlife [ 27 , 32 , 33 , 36 , 40 , 56 , 58 , 59 , 61 ] Spiritual or ritual elements, during or after death, add to closure [ 16 , 18 , 19 , 68 ] Positive events Events that eased suffering, allowed for closure, or provided humor [ 26 , 32 , 33 , 36 , 50 , 55 ] In U.S. and Canadian studies, deaths were described as joyful, sacred, or peaceful, with patients’ wishes achieved [ 16 , 68 , 70 , ...…”