scholarly journals Advance Care Planning interventions for older people with early-stage dementia: A scoping review

2021 ◽  
pp. 205715852110140
Author(s):  
Annika Tetrault ◽  
Maj-Helen Nyback ◽  
Heli Vaartio-Rajalin ◽  
Lisbeth Fagerström
Keyword(s):  
Older People ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Early Stage ◽  
Care Planning ◽  
People With Dementia ◽  
Scoping Reviews ◽  
Future Care ◽  
Study Population ◽  
Advance Care

Advance Care Planning can be used to engage people with dementia in decision-making about future care. The current study aims to advance the state of knowledge about Advance Care Planning interventions aimed at older people with early-stage dementia and to describe the effects of various interventions as well as the feedback on the interventions from this patient group and their family caregivers. The study is reported in accordance with PRISMA for scoping reviews. The search for studies and reports included electronic databases, websites, books, and reference lists. Data from the selected studies, including publication year, title, purpose, study population, intervention, methods, and results, were extracted. Six full-text articles were identified as suitable for inclusion. The six interventions had differing approaches. A supportive structure was helpful for both people with dementia and family caregivers. The feeling of being listened to and engaged in the care planning seems to be of most importance, not the intervention design itself.

Advance care planning: the future

2020 ◽  
pp. bmjspcare-2020-002304
Author(s):  
Judith Rietjens ◽  
Ida Korfage ◽  
Mark Taubert
Keyword(s):  
Advance Care Planning ◽  
Public Awareness ◽  
Care Planning ◽  
Decisional Capacity ◽  
Best Interest ◽  
Awareness Campaigns ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care ◽  
Improve Patient

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.

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

2019 ◽  
Vol 33 (9) ◽  
pp. 1166-1175 ◽  
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.

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

Dementia ◽  
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.

Engaging persons with dementia in advance care planning: Challenges and opportunities

Dementia ◽  
2020 ◽  
pp. 147130122097305
Author(s):  
Tamara Sussman ◽  
Rebecca Pimienta ◽  
April Hayward
Keyword(s):  
Focus Groups ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Service Providers ◽  
Care Planning ◽  
Reflective Process ◽  
Challenges And Opportunities ◽  
Future Care ◽  
Advance Care ◽  
Positive Engagement

This study reports findings from a series of focus groups with persons with dementia and family caregivers intended to explore: (1) perceptions of and experiences with advance care planning (ACP); (2) concerns related to future care including, but not limited to, end-of-life care; and (3) practices that may support positive engagement with ACP. A total of 18 participants including 10 persons with dementia and eight family caregivers participated in five focus groups held in two urban cities in Canada. All focus group deliberations were audio recorded, transcribed verbatim, and analyzed in five stages using a semantic thematic approach. All participants expressed some form of engagement in ACP, but understandings were limited and divergence was expressed regarding the timing of more expansive conversations about future care. Although some persons with dementia were ready to engage in future care discussions, most preferred focusing on the present and suggested their families did not require direction. This placed families in the complex dilemma of protecting their loved ones while compromising their own needs for dialogue. Although individually focused models of ACP engagement hold promise for those persons with dementia ready to engage in future planning, our findings suggest that early engagement of families in the reflective process may go a long way in supporting ACP activation. Our findings further suggest that persons with dementia who do not have close family/friends may require extensive ACP encouragement and support from service providers.

scholarly journals 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 ◽  
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.

scholarly journals Preventing unwanted situations and gaining trust: a qualitative study of older people and families’ experiences with advance care planning in the daily practice of primary care

2019 ◽  
Vol 37 (4) ◽  
pp. 519-524
Author(s):  
Jolien J Glaudemans ◽  
Dick L Willems ◽  
Jan Wind ◽  
Bregje D Onwuteaka Philipsen
Keyword(s):  
Primary Care ◽  
Older People ◽  
Advance Care Planning ◽  
Daily Practice ◽  
Care Planning ◽  
Theory Approach ◽  
Face To Face ◽  
Future Care ◽  
Advance Care

Abstract Background Using advance care planning (ACP) to anticipate future decisions can increase compliance with people’s end-of-life wishes, decrease inappropriate life-sustaining treatment and reduce stress, anxiety and depression. Despite this, only a minority of older people engage in ACP, partly because care professionals lack knowledge of approaches towards ACP with older people and their families. Objective To explore older people’s and their families’ experiences with ACP in primary care. Methods We conducted qualitative, semi-structured, face-to-face interviews with 22 older people (aged >70 years, v/m: 11/11), with experience in ACP, and eight of their family members (aged 40–79 years, f/m: 7/1). Transcripts were inductively analysed using a grounded theory approach. Results We distinguished three main themes. (i) Openness and trust: Respondents were more open to ACP if they wanted to prevent specific future situations and less open if they lacked trust or had negative thoughts regarding general practitioners’ (GPs’) time for and interest in ACP. Engaging in ACP appeared to increase trust. (ii) Timing and topics: ACP was not initiated too early. Quality of ACP seemed to improve if respondents’ views on their current life and future, a few specific future care scenarios and expectations and responsibilities regarding ACP were discussed. (iii) Roles of family: Quality of ACP appeared to improve if family was involved in ACP. Conclusions Quality and accessibility of ACP may improve if GPs and nurses involve family, explain GPs’ interest in ACP and discuss future situations older people may want to prevent, and views on their current life and future.

Advance care planning in different settings for people with dementia: A systematic review and narrative synthesis

2019 ◽  
Vol 17 (6) ◽  
pp. 707-719 ◽  
Author(s):  
Adele J. Kelly ◽  
Tim Luckett ◽  
Josephine M. Clayton ◽  
Liam Gabb ◽  
Slavica Kochovska ◽  
...  
Keyword(s):  
Systematic Review ◽  
Advance Care Planning ◽  
Future Research ◽  
Care Planning ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care ◽  
Surrogate Decision ◽  
The Individual ◽  
Person With Dementia

AbstractBackgroundAdvance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the individual, carers and the health system has yet to be established.AimWe conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated.MethodsA search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals.ResultsOf 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance.ConclusionFuture research should focus on ways to involve people with dementia in decision-making through supported means.

scholarly journals Relating to the end of life through advance care planning: Expectations and experiences of people with dementia and their family caregivers

Dementia ◽  
2022 ◽  
pp. 147130122110663
Author(s):  
Natashe Lemos Dekker ◽  
Sascha R Bolt
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Fine Tuning ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care ◽  
Life Care Planning

Background Dementia is widely considered a progressive condition associated with changes in cognitive capacities, which promotes the idea that people with dementia need to anticipate end-of-life care preferences. There is a growing body of interventions meant to support advance care planning (ACP) for people with dementia and their families. However, a deeper understanding of their experiences and expectations regarding planning the end of life is needed to inform ethically sound and person-centered ACP. This study explores how end-of-life care planning for people with dementia is experienced and perceived in practice. Methods We conducted a secondary analysis of qualitative data from in-depth interviews and ethnographic fieldwork. Participants included people with dementia living in the community or in nursing homes, family caregivers, and professional caregivers. During reflective sessions, the researchers moved back and forth between their original data and overarching topics related to ACP. Both performed deductive coding to filter relevant information from their data. Ongoing discussions allowed for the fine-tuning of themes. Results End-of-life care planning for people with dementia can encompass a paradox of control. While it may foster a sense of being in control, it may also feel like relinquishing control over future situations. It raises concerns regarding responsibility, as present, former and future wishes may not align. Family caregivers are often responsible for concrete end-of-life decision-making, prompting them to weigh previous wishes against present situations. Further, people with dementia may wish to focus on the present and distance themselves from the future. Discussion Advance decisions about end-of-life care are often decontextualized and people may find it difficult to oversee their future conditions and preferences. The widely recognized purpose of ACP to exert control over end-of-life care may need revision to match the needs of people with dementia while they are coping with their condition and an uncertain future.

Understanding what is important to older people living with frailty in relation to advance care planning

2021 ◽  
Vol 27 (9) ◽  
pp. 471-480
Author(s):  
Julie Kinley ◽  
Kate Flemming
Keyword(s):  
Older People ◽  
Advance Care Planning ◽  
Contemporary Literature ◽  
Cochrane Library ◽  
Care Planning ◽  
Process And Outcome ◽  
Future Care ◽  
Advance Care ◽  
The Cochrane Library ◽  
Research Recommendations

Background: Advance care planning (ACP) provides opportunities for people to make decisions about future care. Internationally, the approach to this varies. Older people living with frailty could considerably benefit from discussing and undertaking advance care planning. However, this has not traditionally been a particular focus of their care. Aim: To provide recommendations to support nurses and health professionals to undertake ACP conversations with older people living with frailty through a review of contemporary literature. Methods: The following electronic databases were searched: CINAHL, British Nursing Index and the Cochrane Library. Information about the process and outcome of undertaking an ACP conversation with older people living with frailty was extracted and categorised in relation to care setting. Findings: A total of 69 papers were identified, of which eight met the inclusion criteria. The importance of preparation before starting an ACP conversation was highlighted, as well as key considerations when undertaking such a conversation. From these papers five clinical recommendations, one policy recommendation and two research recommendations are made. Conclusions: Maintaining and improving wellness is important to older people living with frailty. In order that conversations about ACP are acceptable and meaningful to older people living with frailty, they should include: the opportunity to discuss both ‘current’ and ‘future’ care; be focused on their goals of care; and, to be offered routinely to the older person

Ethics of living and dying with dementia

2013 ◽  
Author(s):  
Cees Hertogh ◽  
Jenny van der Steen
Keyword(s):  
Advance Directives ◽  
Advance Care Planning ◽  
Disease Process ◽  
Policy Framework ◽  
Care Planning ◽  
Next Of Kin ◽  
Joint Decision ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care

The gradual progression of dementia means there has to be a constant search for a reasonable balance between supporting autonomy and ensuring proper representation. ∙ Good end of life care for people with dementia depends on adequate advance care planning, startling early in the disease process ∙ Where possible, it involves striving for joint decision-making with the patient and next-of-kin about (future) medical treatment and (future) care. ∙ Written advance directives may support representatives of incompetent patients in their role of surrogate decision maker, but the contents of the directive require interpretation in the context of advance care planning. ∙ The concept of “palliative care” offers a (policy) framework for advance care planning as well as moral guideline for dealing with written advance directives of patients with dementia.

Sign in / Sign up

Export Citation Format

Share Document