End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers

Abstract

Background Dementia caregivers describe knowing what to expect as an unmet need and many are unaware that dementia can be a terminal condition. Dementia with Lewy bodies (DLB) is a common neurodegenerative dementia with unique features which may affect the end of life (EOL). Given the paucity of data on EOL experiences in dementia and unique aspects of DLB affecting EOL, we investigated EOL experiences as reported by caregivers of individuals with DLB. Method We conducted telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years using a semi-structured questionnaire to identify and describe EOL experiences. We used a qualitative descriptive approach to analyze interview transcripts and identify common themes. Results Thirty individuals participated in interviews. Key themes included lack of knowledge regarding what to expect, end-of-life time course (including end-of-life symptoms, declines after hospitalization and falls, and varied EOL trajectories), advance care planning, lack of family understanding, hospice, views regarding right-to-die, medications at the end of life, approaching end of life, the death experience, and activities that enhanced end of life. Lack of communication between health care teams and families and difficulty predicting death timing were two frequently expressed challenges. Conclusions Study results emphasize the need for improved EOL counseling in DLB, recognition of EOL symptoms, earlier hospice involvement, tailoring EOL care to DLB-specific needs, and clinician-family communication. Suggestions for patient and family education are provided. Further research should confirm predictors of approaching EOL in DLB, identify strategies to improve physician recognition of EOL, and develop tools to aid communication and quality EOL care.

Research priorities of caregivers and individuals with dementia with Lewy bodies: An interview study

“…It takes over a year for half of individuals with DLB to receive a diagnosis [33]. Family members of individuals who died with DLB described both lack of knowledge of what to expect and negative experiences relating to lacking healthcare professional education and knowledge [12,34,35]. While α-synuclein deposition has been the presumed pathogenic cause of DLB for years, recent re-analysis questions this assumption [36].…”

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

“…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 , ...…”

“…He told me what I might expect and… That was invaluable.” (Mohammed et al p1232) Structure (social support, information, respite) Lack of support from friends and family, and lack of information about what to expect in caregiving were closely related to caregiver isolation and exhaustion. Caregivers acknowledged the importance of respite, but more often in retrospect after death [ 26 , 28 , 29 , 32 – 42 , 44 , 46 – 51 , 54 – 62 , 64 , 66 ]. “In retrospect .…”

Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis

“…However, the challenge in meeting Medicare dementia guidelines may be particularly prevalent in DLB, as Medicare hospice guidelines fail to account for DLB-specific symptoms that may worsen with approaching EOL. 10 Once individuals with DLB are receiving hospice, DLB-specific considerations may impact care. Hospice comfort packs often include morphine, lorazepam, haloperidol, anticholinergics (for secretions), and antiemetics.…”

“…6,8 Symptoms of DLB such as hallucinations, paranoia, cognitive fluctuations, parkinsonism, orthostatic hypotension, and antipsychotic hypersensitivity 9 may also affect EOL experiences. 10 Individuals with Lewy body dementia have more than double the likelihood of respiratory death as those with AD dementia 4 and commonly die from failure to thrive (65%) or pneumonia/swallowing difficulties (23%). 3 Barriers to quality EOL care in dementia relate to health systems (eg, lack of reimbursement), [11][12][13] difficulty recognizing the EOL in dementia, 14 lack of awareness of a role for palliative care in dementia, [11][12][13] lack of education and staff training, 12,13 need for caregiver support and respite services, [11][12][13] difficulty assessing patient symptoms, 11 and treatment of behavioral symptoms.…”