Interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes: A mixed-methods systematic review

Gonella, Silvia; Mitchell, Gary; Bavelaar, Laura; Conti, Alessio; Vanalli, Mariangela; Basso, Ines; Cornally, Nicola

doi:10.1177/02692163211066733

Cited by 14 publications

(14 citation statements)

References 92 publications

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“…Because caregivers and the settings in which they provide care are diverse, more studies are required to define which interventions are most effective for specific situations or care transitions and how these interventions are successful 575–579 . Improved tools and measures to personalize services for caregivers to maximize their benefits represent an emerging area of research 580–585 .…”

Section: Caregivingmentioning

confidence: 99%

“…Other efforts have attempted to broaden the reach and accessibility of interventions for dementia caregivers through the use of technologies (for instance, video-phone delivery and online training),[564][565][566][567][568][569][570][571][572] while others have disseminated evidence-based dementia care interventions into community-based programs and health care systems 560,573,574. Because caregivers and the settings in which they provide care are diverse, more studies are required to define which interventions are most effective for specific situations or care transitions and how these interventions are successful [575][576][577][578][579]. Improved tools and measures to personalize services for caregivers to maximize their benefits represent an emerging area of research [580][581][582][583][584][585].…”

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confidence: 99%

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2023 Alzheimer's disease facts and figures

2023

Alzheimer's & Dementia

1,136

425

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This article describes the public health impact of Alzheimer's disease, including prevalence and incidence, mortality and morbidity, use and costs of care, and the overall impact on family caregivers, the dementia workforce and society. The Special Report examines the patient journey from awareness of cognitive changes to potential treatment with drugs that change the underlying biology of Alzheimer's. An estimated 6.7 million Americans age 65 and older are living with Alzheimer's dementia today.This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs to prevent, slow or cure AD. Official death certificates recorded 121,499 deaths from AD in 2019, and Alzheimer's disease was officially listed as the sixth-leading cause of death in the United States. In 2020 and 2021, when COVID-19 entered the ranks of the top ten causes of death, Alzheimer's was the seventh-leading cause of death. Alzheimer's remains the fifth-leading cause of death among Americans age 65 and older. Between 2000 and 2019, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 145%. This trajectory of deaths from AD was likely exacerbated by the COVID-19 pandemic in 2020 and 2021. More than 11 million family members and other unpaid caregivers provided an estimated 18 billion hours of care to people with Alzheimer's or other dementias in 2022. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $339.5 billion in 2022. Its costs, however, extend to family caregivers' increased risk for emotional distress and negative mental and physical health outcomes -costs that have been aggravated by COVID-19. Members of the paid health care workforce are involved in diagnosing, treating and caring for people with dementia. In recent years, however, a shortage of such workers has developed in the United States. This shortage -brought about, in part, by COVID-19 -has occurred at a time when more members of the dementia care workforce are needed. Therefore, programs will be needed to attract workers and better train health care teams. Average per-person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are almost three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 22 times as great. Total payments in 2023 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $345 billion. The Special Report examines whether there will be sufficient numbers of 1598

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Section: Caregivingmentioning

confidence: 99%

mentioning

confidence: 99%

2023 Alzheimer's disease facts and figures

2023

Alzheimer's & Dementia

1,136

425

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“…Ideally, families and carers should be meaningfully engaged in shared decision-making processes with healthcare professionals involved in providing care. 6 The quality of end-of-life care and death experience is shaped by the care needs, preferences and experiences of both the person with dementia, and their carer and family. 47 The needs of family carers and the person with dementia are often interdependent (but not always congruent).…”

Section: Integration Of Carementioning

confidence: 99%

Models of care for people with dementia approaching end of life: A rapid review

et al. 2023

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Background: People with dementia have different care and support needs at their end of life compared to people with other life-limiting illnesses, and general palliative care models may not meet the needs of people with dementia and their carers and families. Some dementia-specific end-of-life care models have been implemented, and a summary of existing models was undertaken to inform development of a local model. Aim: To identify best-practice models of care for people in the advanced and end stages of dementia, and their families and carers. Design: A rapid review with narrative summary of peer-reviewed articles and grey literature was conducted. Data sources: Ten databases were searched for articles published between January 2000 and April 2022. Inclusion criteria were: all care settings; AND the model focuses on people with end-stage or advanced dementia; AND contained multiple components. Results: Nineteen articles or reports, describing twelve dementia-specific models of end-of-life care in a range of care settings were identified for inclusion in the review. There is strong evidence that the principles of best practice palliative care for people with advanced dementia are well known, but limited examples of translation of this knowledge into integrated models of care. The key issues that emerged from the findings were: referral and admission to care, integration of care, sustainability and evaluation. Conclusions: Findings can be used to inform development of improved end-of-life care pathways for people with dementia, but well-designed research studies are needed to evaluate the effectiveness of integrated models of care for this vulnerable population.

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“…Thus, family caregivers (FCs) often assume a surrogate decisionmaking role [5] despite often not knowing their relative's preferences with certainty, and their stress increases as their relative approaches the end of life [6]. Therefore, healthcare professionals (HCPs) should offer FCs ongoing and sensitive end-of-life communication to provide emotional support and improve the quality of FCs' remaining time with their relative [7]. FCs indeed experience a high quality NH environment when HCPs provide individualized attention, are responsive to their needs, and are open to dialogue [8,9].…”

Section: Introductionmentioning

confidence: 99%

A Situation-Specific Theory of End-of-Life Communication in Nursing Homes

Gonella

Campagna

Dimonte

2023

IJERPH

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High-quality end-of-life communication between healthcare professionals (HCPs), patients and/or their family caregivers (FCs) improves quality of life and reduces non-beneficial care at the end of life. Nursing homes (NHs) are among the contexts at the forefront of these conversations. Having a solid theoretical basis for the role of end-of-life communication in NHs in transitioning to palliative-oriented care can offer indications for research, practice, education, and policy related to geropalliative care. This study aimed to develop a situation-specific theory of end-of-life communication in NHs by refining an existing theory. A four-step integrative approach was employed that included: (1) checking the assumptions for theorization; (2) exploring the phenomenon through multiple sources; (3) theorizing; and (4) reporting. All elements of the existing end-of-life communication theory in NHs were confirmed: end-of-life communication improved the understanding of FCs about their relatives’ health conditions, shared decision-making, and reflections on the desired preferences of residents/FCs for care at the end of life. Furthermore, the family environment affected the burden of FCs in the decision-making process. Finally, time and resource constraints, regulations, visitation restrictions due to the COVID-19 pandemic, and social and cultural values influenced the quality and timing of communication. The study findings confirmed the impact of the political, historical, social, and cultural context on end-of-life communication, thus providing the basis for a situation-specific theory.

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Interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes: A mixed-methods systematic review

Cited by 14 publications

References 92 publications

2023 Alzheimer's disease facts and figures

2023 Alzheimer's disease facts and figures

Models of care for people with dementia approaching end of life: A rapid review

A Situation-Specific Theory of End-of-Life Communication in Nursing Homes

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