A qualitative study with people with young-onset dementia and their family caregivers on advance care planning: A holistic, flexible, and relational approach is recommended

Rickstal, Romy Van; Vleminck, Aline De; Engelborghs, Sebastiaan; Versijpt, Jan; Block, Lieve Van den

doi:10.1177/02692163221090385

Cited by 16 publications

(24 citation statements)

References 47 publications

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“…The need expressed by professionals to have highly involved caregivers contrasts with the testimonies of caregivers who often feel overloaded and burned by the intensity of care they must provide, often 24 h a day, in patients with a high dependence and burden of symptoms. Responses from health professionals consistently lead to the consideration of shifting palliative care systems towards a holistic and anticipatory planning approach, this is consistent with recent studies with other patient profiles, people with dementia [ 21 ] or heart failure [ 22 ].…”

Section: Discussionsupporting

confidence: 81%

The Experiences and Views on Palliative Care of Older People with Multimorbidities, Their Family Caregivers and Professionals in a Spanish Hospital

et al. 2022

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The increasing prevalence of complex chronic diseases in the population over 65 years of age is causing a major impact on health systems. This study aims to explore the needs and preferences of the multimorbid patient and carers to improve the palliative care received. The perspective of professionals who work with this profile of patients was also taken into account. A qualitative study was conducted using semi-structured interviews with open-ended questions. Separate topic guides were developed for patients, careers and health professionals. We included 12 patients, 11 caregivers and 16 health professionals in Spain. The results showed multiple unmet needs of patients and families/caregivers, including feelings of uncertainty, a sense of fear, low awareness and knowledge about palliative care in non-malignant settings, and a desire to improve physical, psychosocial and financial status. A consistent lack of specialized psychosocial care for both patients and caregivers was expressed and professionals highlighted the need for holistic needs assessment and effective and early referral pathways to palliative care. There is a lack of institutional support for multimorbid older patients in need of palliative care and important barriers need to be addressed by health systems to face the significant increase in these patients.

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Section: Discussionsupporting

confidence: 81%

The Experiences and Views on Palliative Care of Older People with Multimorbidities, Their Family Caregivers and Professionals in a Spanish Hospital

et al. 2022

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“…In the current study, ACP was considered by physicians to be a means or an opportunity for people with dementia of fulfilling a caretaking role toward their family. It has been previously stated by patients and caregivers that if people with dementia undertake ACP, one of their main purposes is to take care of their loved-ones ( Van Rickstal et al, 2022 ). The relational, as opposed to purely individual, nature of ACP appears evident from the viewpoint of all parties involved.…”

Section: Discussionmentioning

confidence: 99%

“…As such, particularly in the context of dementia, a family-rather than a solely patient-centered approached to ACP 10.3389/fnagi.2023.1130642 could be desirable. As physicians also expressed that their wish to safeguard patients' emotional wellbeing shapes their own behavior in terms of ACP, the previous idea of a mutual protective role between people with dementia and their family caregiver (Van Rickstal et al, 2022) could be extended from a dyad to a protective triad which also includes the professional caregiver.…”

Section: Interpretation Of Findingsmentioning

confidence: 99%

“…The very limited number of studies focusing on people with YOD and their family caregivers, showed that they barely engage in ACP, yet have clear preferences for how to do so ( Van Rickstal et al, 2019 ). Among others, these include their wish for physicians to timely initiate and flexibly approach the process, provide accurate information and pay attention to more than only the medical aspects of care ( Van Rickstal et al, 2019 , 2022 ).…”

Section: Introductionmentioning

confidence: 99%

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Experiences with and perspectives on advance care planning in young- and late- onset dementia: A focus group study with physicians from various disciplines

Rickstal

Vleminck

Engelborghs

et al. 2023

Front. Aging Neurosci.

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IntroductionDespite the relevance of advance care planning (ACP) for people with dementia, its uptake in this population is particularly low. Several challenges for ACP in dementia have been identified from physicians’ perspectives. However, the literature available mainly includes general practitioners and focuses exclusively on the context of late-onset dementia. This is the first study to inquire physicians from four highly relevant specialisms in dementia care, with a focus toward potential specificities based on patients’ age. The research question of this study is: “What are physicians’ experiences with and perspectives on discussing ACP with people with young- and/or late-onset dementia?”.MethodsFive online focus groups were conducted with 21 physicians (general practitioners, psychiatrists, neurologists and geriatricians) in Flanders, Belgium. Verbatim transcripts were analyzed through the qualitative method of constant comparative analysis.ResultsPhysicians believed that the societal stigma related to dementia influences people’s reaction to their diagnosis, at times characterized by catastrophic expectations for the future. In this regard, they explained that the topic of euthanasia is sometimes addressed by patients very early in the disease trajectory. Respondents paid ample attention to actual end-of-life decisions, including DNR directives, when discussing ACP in dementia. Physicians felt responsible for providing accurate information on both dementia as a condition, and the legal framework of end-of-life decisions. Most participants felt that patients’ and caregivers’ wish for ACP was more driven by who their personality than by their age. Nonetheless, physicians identified specificities for a younger dementia population in terms of ACP: they believed that ACP covered more domains of life than for older persons. A high consistency regarding the viewpoints of physicians from differing specialisms was noted.DiscussionPhysicians acknowledge the added value of ACP for people with dementia and especially their caregivers. However, they face several challenges for engaging in the process. Attending to specific needs in young-onset, in comparison to late-onset dementia, requires ACP to entail more than solely medical domains. However, a medicalized view on ACP still appears to be dominant in practice as opposed to its broader conceptualization in academia.

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“…One study found that women who were caregivers reported more stress and greater mental and physical consequences compared to caregivers who were men [72]. People with YOD and their caregivers often took a narrow view on advanced care planning, in that they perceived this as solely as ''end-of life'' issues which they would face when end of life came, rather than an ongoing open discussion about the preferences of the types of care the individuals with dementia would choose [73].…”

Section: Psychosocialmentioning

confidence: 99%

Recent research advances in young-onset dementia

Loi

Pijnenburg

Velakoulis

2022

Current Opinion in Psychiatry

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Purpose of reviewYoung-onset dementia (YOD) refers to a dementia for which symptom onset occurs below the age of 65. This review summarizes the recent literature in this area, focusing on updates in epidemiology, diagnosis and service provision. Recent findingsIn the last year, internationally, the prevalence of YOD was reported as 119 per 100 000, but this may vary according to population types. Although the commonest causes of YOD are Alzheimer's disease (AD) and frontotemporal dementia (FTD), there is increasing recognition that YOD is diagnostically and phenotypically broader than AD and FTD. YOD may be due to many other diseases (e.g. Huntington's disease, vascular dementia) whereas accumulation of the same protein (e.g. amyloid protein) may lead to different phenotypes of Alzheimer's disease (such as posterior cortical atrophy and behavioural-variant/ frontal-variant AD). This heterogeneity of phenotypic presentation is also seen in YOD due to known genetic mutations. Biomarkers such as plasma and cerebrospinal fluid proteins, neuroimaging and genetics have shown promise in the early identification of YOD as well as providing further understanding behind the overlap between psychiatric and neurodegenerative conditions occurring in younger people. The management of YOD needs to consider age-specific issues for younger people with dementia and their family networks together with better integration with other health services such as aged, disability and improved access to services and financial assistance.

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A qualitative study with people with young-onset dementia and their family caregivers on advance care planning: A holistic, flexible, and relational approach is recommended

Cited by 16 publications

References 47 publications

The Experiences and Views on Palliative Care of Older People with Multimorbidities, Their Family Caregivers and Professionals in a Spanish Hospital

The Experiences and Views on Palliative Care of Older People with Multimorbidities, Their Family Caregivers and Professionals in a Spanish Hospital

Experiences with and perspectives on advance care planning in young- and late- onset dementia: A focus group study with physicians from various disciplines

Recent research advances in young-onset dementia

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