When Death With Dementia Is “A Memory Seared in My Brain”: Caregivers’ Recommendations to Health Care Professionals

Hovland, Cynthia

doi:10.1177/0733464819884267

Cited by 4 publications

(7 citation statements)

References 29 publications

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“…Exhaustion was also a theme reported with end-of-life dementia caregiving in prior interviews (Peacock, Duggleby, & Koop, 2014). Family tensions can interfere with positive end-of-life experiences in dementia (Peacock et al, 2014) and needing increased support is a common theme in research with dementia caregivers in the end-of-life period (Hovland, 2019;Kupeli et al, 2016;McCabe, You, & Tatangelo, 2016;Peacock, 2013).…”

Section: Experiences Relating To the Caregiving Rolementioning

confidence: 93%

“…Dementia caregivers report distrust in HCPs' dementia knowledge and having to make uniformed choices due to lack of support (Sellars et al, 2019). Dementia caregivers desire education, connection to resources, and a caring and compassionate presence to help improve the end-of-life experience (Hovland, 2019).…”

Section: Caregivers As the Main Drivers Of Carementioning

confidence: 99%

“…Death and post-death experiences and supports employed by caregivers in the end-of-life period Many participants described a need for more education regarding what to expect at the end of life. Knowing what to expect is an unmet need described by caregivers in various dementias (Galvin et al, 2010a;Hennings, Froggatt, & Keady, 2010;Jennings et al, 2015;McCabe et al, 2016) including specific needs regarding what to expect at the end of life (Hennings et al, 2010;Hovland, 2019). Bereaved caregivers outside dementia also report needing improved education and communication regarding the end-of-life process (Harrop et al, 2016).…”

Section: Experiences Relating To the Caregiving Rolementioning

confidence: 99%

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Informal caregiver experiences at the end-of-life of individuals living with dementia with Lewy bodies: An interview study

Armstrong

Alliance

Corsentino³

et al. 2021

Dementia

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Individuals with dementia with Lewy bodies (DLB) commonly die from dementia-related causes, but little is known regarding caregiver experiences during the end-of-life period in DLB. This reflects a critical knowledge gap given the high frequency of informal caregiving for individuals with dementia, high caregiver burden in DLB, and the fact that most individuals with DLB die from this disease. Investigators conducted telephone interviews with family members of individuals who died with DLB in the last 5 years. Investigators used a qualitative descriptive approach to analyze interview transcripts. Participants included 15 children, 13 spouses, and 2 other family members. Interviews averaged 31 min. Major themes included caregivers as the main drivers of care for individuals with DLB throughout the disease course and at the end of life, the impact of DLB features (e.g., fluctuations, hallucinations, and delusions) on end-of-life experiences, experiences relating to the caregiving role, death and post-death experiences, and supports employed by caregivers in the end-of-life period. End-of-life experiences for caregivers of individuals with DLB built on the accumulated burden of the disease course, where caregivers were often responsible for driving DLB care—from making the diagnosis to educating healthcare professionals and double-checking medical decisions. While some end-of-life experiences were consistent with those described in dementia palliative care more generally (e.g., financial stresses, poor sleep, being overwhelmed, and needing increased education and support), many DLB features specifically affected end-of-life caregiver experiences, such as the presence of delusions. Improving caregiver experiences at the end of life in DLB will require improved diagnosis and care for individuals with DLB throughout the disease course and also better strategies for treating behavioral symptoms. More research is needed regarding drivers of quality end-of-life experiences for individuals with DLB and their families and how drivers and strategies may differ between dementias.

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Section: Experiences Relating To the Caregiving Rolementioning

confidence: 93%

Section: Caregivers As the Main Drivers Of Carementioning

confidence: 99%

Section: Experiences Relating To the Caregiving Rolementioning

confidence: 99%

See 1 more Smart Citation

Informal caregiver experiences at the end-of-life of individuals living with dementia with Lewy bodies: An interview study

Armstrong

Alliance

Corsentino³

et al. 2021

Dementia

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“…This study (with recent prior publications on recommendations to professional and positive aspects of caregiving using the same research cohort, Hovland, 2020; Hovland and Mallett, 2020) employed a purposive sampling strategy in which the principal investigator interviewed 30 family caregivers of an older adult who had died from a dementia-related death. The 30 participants were identified through the Alzheimer’s Association-Greater Michigan.…”

Section: Methodsmentioning

confidence: 99%

“…Because there is limited research on caregivers for older adults with dementia that investigate their experiences and what they learned from being a caregiver both before and after the death of their family member, additional inquiries are important. Prior cohort research looked at observations of the family members' physical, behavioral, and psychological changes (Hovland and Mallett, 2020) as well as caregivers' recommendations to healthcare professionals (Hovland, 2020). This study goes further and asked the following two research questions: (1) What did family caregivers of older adults with dementia learn?…”

Section: Research Questionsmentioning

confidence: 99%

Family caregivers for older persons with dementia offer recommendations to current caregivers: a qualitative investigation

Hovland

Mallett

2021

Journal of Research in Nursing

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Background and aims Family members who care for older adults with dementia encounter significant difficulties across many domains. There is limited research in this area; thus, the aim here is to share the actual experiences of 30 family caregivers to other family caregivers and to show how these experiences can provide help and recommendations. Methods This qualitative study of 30 family caregivers of family members aged 65 and older who died with dementia-related diagnoses used in-depth qualitative interviews conducted over a 12-month period for data collection and content analysis to understand the data. The study asked what they learned and what subsequent recommendations these caregivers had for other family caregivers taking care of an older person with dementia. Results Four primary themes emerged from the content data analysis and included the following: (1) “do not do it alone”; (2) patience, love, and kindness; (3) “ first of all, take care of yourself”; and (4) “ get educated.” Conclusions This study is unique in asking directly of family caregivers of older persons who died of dementia what they learned and what they want to share and recommend to ongoing and future family caregivers.

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Dementia Challenges

Hudson¹

2022

Ageing in a Nursing Home

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When Death With Dementia Is “A Memory Seared in My Brain”: Caregivers’ Recommendations to Health Care Professionals

Cited by 4 publications

References 29 publications

Informal caregiver experiences at the end-of-life of individuals living with dementia with Lewy bodies: An interview study

Informal caregiver experiences at the end-of-life of individuals living with dementia with Lewy bodies: An interview study

Family caregivers for older persons with dementia offer recommendations to current caregivers: a qualitative investigation

Dementia Challenges

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