Educating families about end-of-life care in advanced dementia: acceptability of a Canadian family booklet to nurses from Canada, France, and Japan

Arcand, Marcel; Brazil, Kevin; Nakanishi, Miharu; Nakashima, Taeko; Alix, Michel; Desson, Jean François; Morello, Rémy; Belzile, Louise; Beaulieu, Marie; Hertogh, Cees M.P.M.; Toscani, Franco; Steen, Jenny T. van der

doi:10.12968/ijpn.2013.19.2.67

Cited by 34 publications

(61 citation statements)

References 19 publications

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“…Barriers to discussing the terminal nature of dementia and advance care planning are found internationally. 9,28,29 Research to date has focused on education and advance care planning with family carers during advanced stages of dementia 30,31 rather than during mild dementia and involving the person with dementia. One US pilot intervention targeted people with mild dementia and involved a reminiscence activity to examine what it has meant to live well followed by ACP discussion on what it would mean to live well in the future.…”

Section: Discussionmentioning

confidence: 99%

The role of the memory service in helping carers to prepare for end of life: A mixed methods study

Moore

Goodison

Sampson

2018

Int J Geriat Psychiatry

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Objectives The objective of the study is to explore current practice and the role taken by UK memory services in helping carers of people with dementia prepare for the end of life. Methods We used mixed methods including a survey (48 responses/51% response rate) and semistructured interviews (n = 12) with clinicians working in UK memory services accredited by the Memory Services National Accreditation Programme. We used descriptive statistics to report survey findings and thematically analysed interview and survey qualitative data. Results Surveys: services routinely discussed with carers the progressive nature of dementia (89%), legal arrangements (health: 72%; finances: 74%), advance care planning (63%), and implications of loss of capacity (61%). Fewer services routinely discussed the terminal nature of dementia (41%) and meaning of death (11%) with carers. Most (89%) agreed that these conversations were in line with their role. Interview findings corresponded with survey findings. Themes included diagnosis considered too early to discuss end of life, discussions being inconsistent with a “living well” approach, people with dementia being resistant to conversations, and discussions of spirituality crossing professional boundaries. Services' capacity for follow‐up with carers impacted on ability to broach these topics. Conclusions More in‐depth and distressing topics such as end of life and advance care planning require longer follow‐up to establish relationships to broach difficult topics. Variability in follow‐up practices between services created inequity in the extent to which memory services could address these topics. More research is required to investigate the best method for broaching these topics with carers and the person with mild dementia within different health care contexts.

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Section: Discussionmentioning

confidence: 99%

The role of the memory service in helping carers to prepare for end of life: A mixed methods study

Moore

Goodison

Sampson

2018

Int J Geriat Psychiatry

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“…The booklet was endorsed by nurses in long-term care settings; it has not been tested for its impact on family decision-makers. 38 _Volandes has tested multiple video decision aids to assist cognitively intact elderly patients to define their advance care plans concerning many disease states and potential treatments, including advanced dementia. 26,39,40 Compared to a verbal narrative alone, a video showing a patient with a disease (i.e.…”

Section: Discussionmentioning

confidence: 99%

Development and Testing of a Decision Aid on Goals of Care for Advanced Dementia

Einterz

Gilliam

Lin

et al. 2014

Journal of the American Medical Directors Association

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Objectives Decision aids are effective to improve decision-making, yet they are rarely tested in nursing homes (NHs). Study objectives were to 1) examine the feasibility of a Goals of Care (GOC) decision aid for surrogate decision-makers (SDMs)of persons with dementia; and 2) test its effect on quality of communication and decision-making. Design Pre-post intervention to test a GOC decision aid intervention for SDMs for persons with dementia in NHs. Investigators collected data from reviews of resident health records and interviews with SDMs at baseline and 3-month follow up. Setting Two NHs in North Carolina. Participants 18 residents who were over 65 years of age, had moderate to severe dementia on the Global Deterioration Scale (GDS=5,6,7), and an English-speaking surrogate decision-maker. Intervention 1) GOC Decision Aid video viewed by the SDM, and 2) a structured care plan meeting between the SDM and interdisciplinary NH team Measurements Surrogate knowledge, quality of communication with health care providers, surrogate-provider concordance on goals of care, and palliative care domains addressed in the care plan. Results 89% of the SDMs thought the decision aid was relevant to their needs. After viewing the video decision aid, SDMs increased the number of correct responses on knowledge-based questions (12.5 vs 14.2, P<.001). At 3 months they reported improved quality of communication scores (6.1 vs 6.8, P=.01) and improved concordance on primary goal of care with nursing home team (50% vs 78%, P=.003). The number of palliative care domains addressed in the care plan increased (1.8 vs 4.3, P<.001). Conclusion The decision-support intervention piloted in this study was feasible and relevant for surrogate decision-makers of persons with advanced dementia in nursing homes, and it improved quality of communication between SDM and NH providers. A larger randomized clinical trial is underway to provide further evidence of the effects of this decision aid intervention.

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“…A preliminary version of the booklet in the German language, entitled "Advanced dementia and end of life -a guide for caregivers on the aims and options of palliative and hospice care", was developed by an experienced psychiatrist and palliative care specialist for relatives of people with advanced dementia. Existing booklets were considered in the development of the current informational guide [11,14]. After the preliminary version of the booklet was drafted, a nominal group process was employed [15] with a panel of 19 experts from all relevant disciplines including gerontopsychiatry, neurology, palliative care, nursing care, ethics, and legal studies.…”

Section: Study Phase 1: Development Of the Bookletmentioning

confidence: 99%

“…Currently, 1.7 million people with dementia live in Germany and approximately 300,000 new cases occur every year [9]. There is a scare amount of available information regarding end of life issues for caregivers of people with advanced dementia [10][11][12]. The WHO emphasizes the need for support for caregivers of people with dementia [13].…”

Section: Introductionmentioning

confidence: 99%

Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia

et al. 2020

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Background: Since people with advanced dementia are usually not able to make complex decisions, it is usually the family caregivers, as proxies, who have to decide on treatments and their termination. However, these decisions are difficult for the caregivers to make, as they are often inadequately informed and cannot properly assess the consequences; moreover, they are concerned about harming the sick person. We aimed to first develop an informative booklet about palliative care issues for caregivers of people with advanced dementia. Secondly, we aimed to investigate a change in family caregivers' knowledge regarding palliative care issues and caregivers' involvement in medical and care decisions before and after studying this booklet. Methods: A first version of the booklet was drafted by an experienced psychiatrist and palliative care specialist based on existing booklets and guidelines; necessary cultural adaptions were taken into consideration. A nominal group process was conducted to develop the informative guide. In order to investigate the acceptance of the booklet and the possibility to implement it, 38 patient-caregiver dyads were recruited, and caregivers were interviewed both before receiving the booklet and after 3 months of receiving the booklet. Results: Experts from various disciplines collaborated on a German booklet for family caregivers of people with advanced dementia as an information aid regarding issues of palliative care. The subsequent test showed that all caregivers had experienced a personal benefit from the booklet. Caregivers had a significant gain of knowledge after provision of the booklet. A large proportion of caregivers who had not previously considered and/or discussed medical topics reported that they had done so within 3 months after obtaining the booklet, or planned to do so in the near future. Conclusions: The caregivers valued the comprehensible, concise and well-structured information guide on palliative care issues in advanced dementia. They agreed it increases knowledge and prompts decision making and therefore should be developed in many languages and disseminated among family caregivers of people with dementia.

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Educating families about end-of-life care in advanced dementia: acceptability of a Canadian family booklet to nurses from Canada, France, and Japan

Abstract: The booklet may help nurses educate families about end-of-life issues in dementia palliative care, but local adaptation of the booklet content and physician engagement are necessary.

Cited by 34 publications

References 19 publications

The role of the memory service in helping carers to prepare for end of life: A mixed methods study

The role of the memory service in helping carers to prepare for end of life: A mixed methods study

Development and Testing of a Decision Aid on Goals of Care for Advanced Dementia

Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia

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