Needs of People with Severe Dementia at the End-of-Life: A Systematic Review

Perrar, Klaus Maria; Schmidt, Holger; Eisenmann, Yvonne; Cremer, Bernadette; Voltz, Raymond

doi:10.3233/jad-140435

Cited by 40 publications

(35 citation statements)

References 11 publications

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“…These elements are represented by the two EAPC Delphi study domains found most important by experts [4] and are also consistently seen as attributes of a good death [23]. In a systematic review on needs of people with advanced dementia, Perrar et al [24] additionally found environmental and supportive needs, relating to more practical needs such as the physical environment [25] and which should not be neglected as a means to bring comfort for people with advanced dementia. Also, an optimal approach for people with dementia more generally combines availability of medical care in the background with a frontline of social and human approach by dedicated nursing staff and volunteers.…”

Section: Discussionmentioning

confidence: 99%

Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development

et al. 2017

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BackgroundWhen entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base.MethodsIn 2015–2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries. The terminal phase was defined as dying but because of the difficulty predicting it, we included advanced dementia. We initially analysed the three parts separately, followed by an integrated analysis of (1)-(3) to inform service development.Results(1) The EAPC domain of “avoiding overly aggressive, burdensome, or futile treatment” was regarded of particular relevance in the terminal phase, along with a number of recommendations that refer to providing of comfort. (2) Families preferred continuity in care and living arrangements. Despite a recognition that this was a time when they had complex support needs, they found it difficult to accept involvement of a large team of unfamiliar (professional) caregivers. Mostly, terminal care was preferred at the place of residence. (3) The expert interviews identified preferred, successful models in which a representative of a well-trained team has the time, authority and necessary expertise to provide care and education of staff and family to where people are and which ensure continuity of relationships with and around the patient.ConclusionA mobile team that specializes in palliative care in dementia and supports professional and family caregivers is a promising model. Compared to transfer to a hospice in the last weeks or days, it has the potential to address the priorities of families and patients for continuity of care, relationships and specialist expertise.

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Section: Discussionmentioning

confidence: 99%

Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development

et al. 2017

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“…The national plan recommended psychiatric hospitals and nursing homes as a treatment option for people with moderate or severe challenging behaviour in dementia (Ministry of Health, Labour, and Welfare, ), while community‐based mental health services have been designated as the main method for addressing challenging behaviour in other countries. Most research examining palliative care for people with dementia has focused on end‐of‐life care in residential settings (van der Steen, ; Perrar et al ., ). There has been no examination of professional caregivers' perspectives regarding palliative care for dementia in community care settings.…”

Section: Introductionmentioning

confidence: 97%

Quality of care for people with dementia and professional caregivers' perspectives regarding palliative care in Japanese community care settings

Nakanishi

Hirooka

Morimoto

et al. 2016

Int J Geriat Psychiatry

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“…Palliative care for persons with dementia is often complex, and heterogeneous care needs may arise (Perrar, Schmidt, Eisenmann, Cremer, & Voltz, 2015), especially in the advanced stages (Hendriks, Smalbrugge, Galindo-Garre, Hertogh, & van der Steen, 2015;Mitchell et al, 2009). Lacking skills and knowledge among nursing staff may adversely affect the quality of palliative care (Erel, Marcus, & Dekeyser-Ganz, 2017;Mitchell et al, 2009;Robinson et al, 2014).…”

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confidence: 99%

Nursing Staff Needs in Providing Palliative Care for Persons With Dementia at Home or in Nursing Homes: A Survey

Bolt

Meijers

Steen

et al. 2020

J of Nursing Scholarship

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Purpose This study aimed to evaluate what types and forms of support nursing staff need in providing palliative care for persons with dementia. Another aim was to compare the needs of nursing staff with different educational levels and working in home care or in nursing homes. Design A cross‐sectional, descriptive survey design was used. Methods A questionnaire was administered to a convenience sample of Dutch nursing staff working in the home care or nursing home setting. Data were collected from July through October 2018. Quantitative survey data were analyzed using descriptive statistics. Data from two open‐ended survey questions were investigated using content analysis. Findings The sample comprised 416 respondents. Nursing staff with different educational levels and working in different settings indicated largely similar needs. The highest‐ranking needs for support were in dealing with family disagreement in end‐of‐life decision making (58%), dealing with challenging behaviors (41%), and recognizing and managing pain (38%). The highest‐ranking form of support was peer‐to‐peer learning (51%). If respondents would have more time to do their work, devoting personal attention would be a priority. Conclusions Nursing staff with different educational levels and working in home care or in nursing homes endorsed similar needs in providing palliative care for persons with dementia and their loved ones. Clinical Relevance It is critical to understand the specific needs of nursing staff in order to develop tailored strategies. Interventions aimed at increasing the competence of nursing staff in providing palliative care for persons with dementia may target similar areas to support a heterogeneous group of nurses and nurse assistants, working in home care or in a nursing home.

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Needs of People with Severe Dementia at the End-of-Life: A Systematic Review

Cited by 40 publications

References 11 publications

Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development

Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development

Quality of care for people with dementia and professional caregivers' perspectives regarding palliative care in Japanese community care settings

Nursing Staff Needs in Providing Palliative Care for Persons With Dementia at Home or in Nursing Homes: A Survey

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