Experiences of Caregivers of Persons Dying with Rapidly Progressive versus Slower-Duration Dementia Syndromes (GP122)

Outcomes 1. Understand the end-of-life experiences from the perspective of bereaved care partners with sporadic Creutzfeldt Jacob Disease.2. Evaluate end-of-life experiences from the perspective of bereaved care partners with Alzheimer's dementia or other slower-course dementia syndromes. Key Message This qualitative study found differences in caregiver perceptions of end-of-life experiences comparing rapid and slower progression dementia types. Importance One in three older adults dies with or from dementia. While attention is paid to the precise diagnosis of dementia, little is known whether different diagnoses lead to meaningful differences in end-of-life experiences. Objective(s) To compare perspectives on end-of-life experiences between bereaved caregivers of “rapid” type decedents (prognosis of < 1 year) or “slower” type (prognosis of 5-20 years). Scientific Methods Utilized Secondary analysis of two qualitative studies of palliative care needs in dementia. Semi-structured interviews were conducted with bereaved caregivers: 12 of decedents with “rapid” sporadic Creutzfeldt Jacob Disease and 15 of decedents with Alzheimer's dementia and other “slower” syndromes. We analyzed transcripts thematically and comparatively. Results Caregivers of decedents with rapid-type dementia had a median age of 59 (range 45-73), 6 female, 9 spouses. Slower caregivers had a median age of 69 (45-82), 9 female, 11 spouses. We identified four main themes. (1) End-of-life preparation for rapid type occurred at diagnosis ∼2 months before death, whereas slower type plans required multiple adaptations. (2) Family disagreements were acute in rapid type, whereas families could resolve disagreements with slower types. (3) Religion and spirituality did not differ by dementia type; caregivers with ongoing religious practices adapted them to patient decline and caregiving responsibilities; others re-connected with religion/spiritualty. (4) Use of hospice: 100% of those with rapid dementia enrolled and 67% died at home; CPs reported difficulty accessing care at the right time or in a disease-adapted way and substantial distress around administration of medication and opioids at end-of-life. Among slower dementia, 60% enrolled in hospice and died at home. Conclusion(s) While there are similarities in end-of-life experiences by dementia type, there are also meaningful differences. Impact Efforts to improve end-of-life care for dementia should avoid a one-size-fits-all approach, attending to variations in preparation, distressing symptoms, hospice eligibility and experiences by dementia subtype.