Development and dissemination of an ethical guidance and person‐centred isolation care planning tool to support the care of people with dementia during the COVID‐19 pandemic

ObjectivesThere is increased global focus on advance care planning (ACP) with attention from policymakers, more education programmes, laws and public awareness campaigns.MethodsWe provide a summary of the evidence about what ACP is, and how it should be conducted. We also address its barriers and facilitators and discuss current and future models of ACP, including a wider look at how to best integrate those who have diminished decisional capacity.ResultsDifferent models are analysed, including new work in Wales (future care planning which includes best interest decision-making for those without decisional capacity), Asia and in people with dementia.ConclusionsACP practices are evolving. While ACP is a joint responsibility of patients, relatives and healthcare professionals, more clarity on how to apply best ACP practices to include people with diminished capacity will further improve patient-centred care.

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Discussions Between People With Dementia and Care Partners About End-of-Life Care Planning

Innovation in Aging ◽

10.1093/geroni/igaa057.526 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 162-162

Author(s):

Megan Shepherd-Banigan ◽

Cassie Ford ◽

Emmanuelle Belanger ◽

Courtney Van Houtven

Keyword(s):

End Of Life ◽

Linear Models ◽

Positive Association ◽

Living Will ◽

Amyloid Pet ◽

Care Planning ◽

Care Plans ◽

People With Dementia ◽

Care Partners ◽

Eol Care

Abstract Advanced care planning (ACP) leads to better end-of-life (EoL) care. Yet, some care-partners are unaware of the person with dementia’s (PwD) preferences. Care-partners play an important role in urging PwD to consider their EoL care wishes early in their disease course and to document those wishes. However, it is unknown whether discussions between care-partners and PwD are associated with documenting EoL care plans. We apply generalized linear models to baseline data from the CARE-IDEAS study which includes a sample of patients who received an amyloid PET scan and their care-partners (n=1,672). We examine the association between PwD report of having discussed EoL care with their care-partner and PwD report of having documented their plans through an advanced directive, a living will, or designating a health care proxy. PwD who reported speaking with their care-partners about EoL care were 10% (marginal probability (MP) 0.10; 95% CI: 0.8, 0.13) more likely to have documented their EoL care wishes. Furthermore, if PwD and care-partners agreed that they had discussed EoL care, PwD were 7% (MP 0.7; 95% CI 0.04, 0.10) more likely to report that they documented their EoL care plans. The positive association between communicating with care-partners about EoL care and having formal EoL care plans suggests that the ACP process could be a systematic approach to increase the care-partner’s knowledge of PwD EoL wishes. These results also suggest that increasing involvement of care partners in ACP may encourage patients to document their wishes at end of life.

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Couples affected by dementia and their experiences of advance care planning: a grounded theory study

Ageing and Society ◽

10.1017/s0144686x1800106x ◽

2018 ◽

Vol 40 (2) ◽

pp. 439-460 ◽

Cited By ~ 2

Author(s):

Tony Ryan ◽

Jane McKeown

Keyword(s):

Grounded Theory ◽

End Of Life ◽

Advance Care Planning ◽

Care Planning ◽

Policy And Practice ◽

Global Policy ◽

Formal Service ◽

People With Dementia ◽

Advance Care ◽

End Of Life Issues

AbstractGlobal policy places emphasis on the implementation and usage of advance care planning (ACP) to inform decision making at the end of life. For people with dementia, where its use is encouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in parts of Europe. Using a constructivist grounded theory methodology, this study explores the ways in which co-residing couples considered ACP. Specifically, it seeks to understand the ways in which people with dementia and their long-term co-residing partners consider and plan, or do not plan, for future medical and social care. Sixteen participants were interviewed. They identified the importance of relationships in the process of planning alongside an absence of formal service support and as a result few engaged in ACP. The study recognises the fundamental challenges for couples in being obliged to consider end-of-life issues whilst making efforts to ‘live well’. Importantly, the paper identifies features of the ACP experience of a relational and biographical nature. The paper challenges the relevance of current global policy and practice, concluding that what is evident is a process of ‘emergent planning’ through which couples build upon their knowledge of dementia, their networks and relationships, and a number of ‘tipping points’ leading them to ACP. The relational and collective nature of future planning is also emphasised.

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Medicaid Personal Care Services for Children With Intellectual Disabilities: What Assistance Is Provided? When Is Assistance Provided?

Intellectual and Developmental Disabilities ◽

10.1352/1934-9556-52.1.24 ◽

2014 ◽

Vol 52 (1) ◽

pp. 24-31 ◽

Cited By ~ 1

Author(s):

Timothy R. Elliott ◽

Ashweeta Patnaik ◽

Emily Naiser ◽

Constance J. Fournier ◽

Darcy K. McMaughan ◽

...

Keyword(s):

Intellectual Disability ◽

Assessment Procedure ◽

Care Planning ◽

Personal Care ◽

Planning Tool ◽

School Services ◽

Care Services ◽

Service Patterns ◽

Policies And Programs ◽

Families With Children

Abstract We report on the nature and timing of services provided to children with an intellectual disability (ID) identified by a new comprehensive assessment and care planning tool used to evaluate children's needs for Medicaid Personal Care Services (PCS) in Texas. The new assessment procedure resulted from a legal settlement with the advocacy community. Participants in the study were 1,109 children ages 4–20 with an intellectual disability diagnosis who were assessed between January and April of 2010. The need for assistance is higher on Saturday and Sunday, when school services are not available. We report differences in service patterns for children who vary in ID severity. Finally, we consider the implications of our results for policies and programs that serve families with children with an ID.

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Limited engagement in, yet clear preferences for advance care planning in young-onset dementia: An exploratory interview-study with family caregivers

Palliative Medicine ◽

10.1177/0269216319864777 ◽

2019 ◽

Vol 33 (9) ◽

pp. 1166-1175 ◽

Cited By ~ 2

Author(s):

Romy Van Rickstal ◽

Aline De Vleminck ◽

Melissa D Aldridge ◽

Sean R Morrison ◽

Raymond T Koopmans ◽

...

Keyword(s):

Family Caregivers ◽

Advance Care Planning ◽

Quality Care ◽

Third Party ◽

Care Planning ◽

Structured Interviews ◽

Young Onset ◽

People With Dementia ◽

Advance Care ◽

Young Onset Dementia

Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers’ preferences for how to ideally engage in the process with patients, family and professionals. Design: A qualitative study was conducted: we analysed semi-structured interviews ( n = 15) through the method of constant comparative analysis. Setting/participants: We included Flemish family caregivers of persons with young-onset dementia. Results: Plans for the future typically concerned non-medical affairs. Participants’ limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients’ cognitive competence. However, endorsement for advance care planning showed from respondents’ preferences that it should be initiated timely, by a third party, and emphasize patients’ remaining capacities. Finally, the need for information and high-quality care emerged. Conclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.

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Willingness of family caregivers of people with dementia to undertake Advance Care Planning: Examining an extended model of the Theory of Planned Behavior

Dementia ◽

10.1177/1471301220922761 ◽

2020 ◽

pp. 147130122092276

Author(s):

Ile Kermel Schiffman ◽

Perla Werner

Keyword(s):

Theory Of Planned Behavior ◽

Family Caregivers ◽

Planned Behavior ◽

Advance Care Planning ◽

Subjective Norms ◽

Hierarchical Regression ◽

Care Planning ◽

Medical Decisions ◽

People With Dementia ◽

Advance Care

Background and objectives Family caregivers of people with dementia experience high burden making medical decisions for their loved ones. Undertaking Advance Care Planning (ACP) can help reduce burden and stress. Having experiences making medical decisions for someone else may influence the way people make decisions for themselves. Therefore the aim of this study was to assess the willingness of family caregivers of people with dementia to undertake ACP for themselves, using the Theory of Planned Behavior. Research design and methods Face-to-face interviews were conducted with 195 family caregivers of people with dementia. A structured questionnaire was used to assessed participants’ attitudes, subjective norms, perceived control, anticipated regret, the wish to prolong life and caregiver burden. Hierarchical regression analysis was performed to test the contribution of the variables to the willingness to undertake ACP. Results Overall, participants expressed moderate willingness to undertake ACP. Among the various options for undertaking ACP, the highest willingness expressed was to appoint a durable power of attorney and the lowest willingness was to have informal conversations with their doctor. The hierarchical regression revealed that attitudes, subjective norms and anticipated regrets were main determinants of the willingness to undertake ACP. Discussion and implications Interventions should be developed to encourage family members to undertake ACP for themselves, which emphasize the advantages of the process and involve significant others in the formal and informal aspects of ACP.

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P1-505: IMPROVING CARE FOR PEOPLE WITH DEMENTIA: A SURVEY ON HOW TO INCREASE UPTAKE OF ADVANCE CARE PLANNING USING A DISCUSSION AID IN PATIENTS WITH ADVANCED DEMENTIA

Alzheimer s & Dementia ◽

10.1016/j.jalz.2019.06.1110 ◽

2019 ◽

Vol 15 ◽

pp. P462-P462

Author(s):

Esther Pei Ying Ho

Keyword(s):

Advance Care Planning ◽

Care Planning ◽

Advanced Dementia ◽

People With Dementia ◽

Advance Care

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Which moral barriers and facilitators do physicians encounter in advance care planning conversations about the end of life of persons with dementia? A meta-review of systematic reviews and primary studies

BMJ Open ◽

10.1136/bmjopen-2020-038528 ◽

2020 ◽

Vol 10 (11) ◽

pp. e038528

Author(s):

Angela JJM Keijzer-van Laarhoven ◽

Dorothea P Touwen ◽

Bram Tilburgs ◽

Madelon van Tilborg-den Boeft ◽

Claudia Pees ◽

...

Keyword(s):

End Of Life ◽

Family Caregivers ◽

Advance Care Planning ◽

Systematic Reviews ◽

Moral Dilemmas ◽

Barriers And Facilitators ◽

Care Planning ◽

People With Dementia ◽

Meta Review ◽

Advance Care

Importance and objectiveConducting advance care planning (ACP) conversations with people with dementia and their relatives contributes to providing care according to their preferences. In this review, we identify moral considerations which may hinder or facilitate physicians in conducting ACP in dementia.DesignFor this meta-review of systematic reviews and primary studies, we searched the PubMed, Web of Science and PsycINFO databases between 2005 and 30 August 2019. We included empirical studies concerning physicians’ moral barriers and facilitators of conversations about end-of-life preferences in dementia care. The protocol was registered at Prospero (CRD42019123308).Setting and participantsPhysicians and nurse practitioners providing medical care to people with dementia in long-term and primary care settings. We also include observations from patients or family caregivers witnessing physicians’ moral considerations.Main outcomesPhysicians’ moral considerations involving ethical dilemmas for ACP. We define moral considerations as the weighing by the professional caregiver of values and norms aimed at providing good care that promotes the fundamental interests of the people involved and which possibly ensues dilemmas.ResultsOf 1347 studies, we assessed 22 systematic reviews and 51 primary studies as full texts. We included 11 systematic reviews and 13 primary studies. Themes included: (1) beneficence and non-maleficence; (2) respecting dignity; (3) responsibility and ownership; (4) relationship and (5) courage. Moral dilemmas related to the physician as a professional and as a person. For most themes, there were considerations that either facilitated or hindered ACP, depending on physician’s interpretation or the context.ConclusionsPhysicians feel a responsibility to provide high-quality end-of-life care to patients with dementia. However, the moral dilemmas this may involve, can lead to avoidant behaviour concerning ACP. If these dilemmas are not recognised, discussed and taken into account, implementation of ACP as a process between physicians, persons with dementia and their family caregivers may fail.

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