Attitudes toward advance care planning among persons with dementia and their caregivers.
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ABSTRACT: Objectives
To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race.Design
Cross-sectional survey.Setting
13 geographically dispersed Alzheimer's Disease Centers across the United States.Participants
431 racially diverse caregivers of persons with dementia.Measurements
Survey on "Care Planning for Individuals with Dementia."Results
The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful.Conclusions
Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.
SUBMITTER: Pettigrew C
PROVIDER: S-EPMC6962575 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest-posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p = .008 and p < .001, respectively), knowledge of ACP (both p < .001), and significant reductions in decisional conflicts (both p < .001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p = .001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care.
| S-EPMC7556500 | biostudies-literature
Project description:BackgroundAdvance care planning gives patients and their family members the possibility to consider and make decisions regarding future care and medical procedures.AimTo explore the view of people in the early stage of dementia on planning for future care.Research designThe study is a qualitative interview study with a semistructured interview guide. The data were analyzed according to the Qualitative Analysis Guide of Leuven.Participants and research contextDementia nurses assisted in the recruiting of people with dementia for participation in the study. Study information was mailed to 95 people with early stage dementia. Ten people with dementia and eight caregiver spouses participated in the study.Ethical considerationsPeople with dementia belong to a vulnerable patient group, and care was taken in the areas of informed consent and accessible information.FindingsThe views of people with dementia are characterized by a complex storyline involving tensions and movement within the themes of wants, beliefs, and levels of insight. Participants wanted to think about the future but also wanted to live in the here and now.DiscussionHigh demands are placed on the advance care planning process for people with dementia and their family caregivers. A dignity-enhancing approach in dementia care emphasizes the dignity of and respect for this vulnerable and care-dependent patient group.ConclusionThe process of advance care planning in dementia care needs to go beyond person-centered care to a relationship-centered process. The illness trajectory and the impact on autonomy need to be taken into consideration.
| S-EPMC9127932 | biostudies-literature
Project description:Background: Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare. Objective: We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score ≥13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP. Design: A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted. Patient-surrogate dyads were randomized to SPIRIT in person (in a private room in a memory clinic) or SPIRIT remote (via videoconferencing from home). Setting/Subjects: Twenty-three dyads of PWDs and their surrogates were recruited from an outpatient brain health center. Participants completed preparedness outcome measures (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) at baseline and two to three days post-intervention, plus a semistructured interview. Levels of articulation of end-of-life wishes of PWDs during SPIRIT sessions were rated (3 = expressed wishes very coherently, 2 = somewhat coherently, and 1 = unable to express coherently). Results: All 23 were able to articulate their end-of-life wishes very or somewhat coherently during the SPIRIT session; of those, 14 PWDs had moderate dementia. While decision-making capacity was higher in PWDs who articulated their wishes very coherently, MoCA scores did not differ by articulation levels. PWDs and surrogates perceived SPIRIT as beneficial, but the preparedness outcomes did not change pre-post. Conclusions: SPIRIT engaged PWDs and surrogates in meaningful ACP discussions, but requires testing of efficacy and long-term outcomes.
| S-EPMC6818478 | biostudies-literature
Project description:BackgroundShared decision-making provides an approach to discuss advance care planning in a participative and informed manner, embodying the principles of person-centered care. A number of guided approaches to achieve shared decision-making already exist, such as the three-talk model. However, it is uncertain whether daily practice methods in nursing home wards for persons with dementia comply with the underpinnings of this model. It is also uncertain whether professionals consider shared decision-making to be important in this context, and whether they perceive themselves sufficiently competent to practice this approach frequently.MethodsThe study has a cross-sectional design, with 65 wards (46 Belgian nursing homes) participating in the study. We compared nursing home professionals' and residents' perspectives on the level of shared decision-making during advance care planning conversations with ratings from external raters. Residents and professionals rated the level of shared decision-making by means of a questionnaire, which included the topic of the conversation. External raters assessed audio recordings of the conversations. Professionals filled in an additional self-report questionnaire on the importance of shared decision-making, their competence in practicing the approach, and with what frequency.ResultsAt ward level, professionals and residents rated the average achieved level of shared decision-making 71.53/100 (σ = 16.09) and 81.11/100 (σ = 19.18) respectively. Meanwhile, raters gave average scores of 26.97/100 (σ = 10.45). Only 23.8% of residents referred to advance care planning as the topic of the conversation. Professionals considered shared decision-making to be important (x̄=4.48/5, σ = 0.26). This result contrasted significantly with the frequency (x̄=3.48/5, σ = 0.51) and competence (x̄=3.76/5, σ = 0.27) with which these skills were practiced (P < 0.001).ConclusionsResidents with dementia are grateful when involved in discussing their care, but find it difficult to report what is discussed during these conversations. Receiving more information about advance care planning could provide them with the knowledge needed to prepare for such a conversation. External raters observe a discrepancy between the three-talk model and daily practice methods. Training programs should focus on providing professionals with better knowledge of and skills for shared decision-making. They should also promote team-based collaboration to increase the level of person-centered care in nursing home wards for persons with dementia.
| S-EPMC7532572 | biostudies-literature
Project description:ImportanceAdvance care planning (ACP), in which patients or their surrogates discuss goals and preferences for care with physicians, attorneys, friends, and family, is an important approach to help align goals with actual treatment. ACP may be particularly valuable in patients with advanced serious illnesses such as Alzheimer's disease and related dementias (ADRDs) for whom surgery carries significant risks.ObjectiveTo determine the frequency, timing, and factors associated with ACP billing in Medicare beneficiaries with ADRD undergoing nontrauma inpatient surgery.DesignThis national cohort study analyzes Medicare fee-for-service claims data from 2016 to 2017. All patients had a 6-month lookback and follow-up period.SettingNational Medicare fee-for-service data.ParticipantsAll patients with ADRD, defined according to the Chronic Conditions Warehouse, undergoing inpatient surgery from July 1, 2016 to June 30, 2017.ExposuresPatient demographics, medical history, and procedural outcomes.Main outcomeACP billing codes from 6 months before to 6 months after admission for inpatient surgery.ResultsThis study included 289,428 patients with ADRD undergoing surgery, of whom 21,754 (7.5%) had billed ACP within the 6 months before and after surgical admission. In a multivariable analysis, patients of white race, male sex, and residence in the Southern and Midwestern United States were at the highest risk of not receiving ACP. Of all patients who received ACP, 5960 (27.4%) did so before surgery while 12,658 (52.8%) received ACP after surgery. Timing of ACP after surgery was associated with an Elixhauser comorbidity index of 3 or higher (1.23, p = 0.045) and major postoperative complication or death (odds ratio 1.52, p < 0.0001).Conclusions and relevanceOverall ACP billing code use is low among Medicare patients with ADRD undergoing surgery. Billed ACP appears to have a reactive pattern, occurring most commonly after surgery and in association with postoperative mortality and complications. Additional study is warranted to understand barriers to use.
| S-EPMC8373690 | biostudies-literature
Project description:Advance care planning (ACP) can improve outcomes for persons living with dementia (PLwD). Clinicians see the lack of acceptability of these conversations as a barrier to ACP in individuals with mild dementia. COVID-19 pandemic has magnified the need for ACP discussions in older adults, particularly for those living with dementia. In light of the pandemic, much of the healthcare is provided virtually, but little evidence exists on how to best implement ACP virtually. We designed Voice Your Values (VYV), a tailored ACP intervention for persons living with mild dementia and their trusted individuals such as friends or family. Purpose Determine the acceptability of the VYV intervention, in terms of its content and the potential utility of videoconferencing to deliver it. Methods For this pilot study, we recruited 21 dyads of older adults with mild dementia and their trusted individuals from five geriatric clinics in Ontario, Canada. The tailored VYV intervention was delivered to dyads over two sessions over videoconferencing. Acceptability was assessed using scores on a modified Treatment Evaluation Inventory. The interventionist diary and Researcher Virtual Experience Questionnaire were used to examine facilitators and barriers, whereas Participant Virtual Experience Questionnaire was used to understand their experience. Qualitative data was analyzed using inductive content analysis. Results 100% of the participants rated VYV as acceptable. Participants and researcher rated video and sound quality highly. PLwD who lived with their trusted individuals were more likely to find the intervention acceptable (t = 3.559, p = 0.001, β = 0.323). Five interrelated themes were established that describe the acceptability of the virtually delivered VYV intervention. All PLwD were able to articulate their values and wishes related to being in a terminal and vegetative states and had them documented. Conclusion The virtual VYV intervention was an acceptable approach to ACP in older adults with mild dementia and their trusted individuals.
| S-EPMC9041841 | biostudies-literature
Project description:BackgroundAdvance care planning has been advocated as a way for people to have their wishes recorded and respected in relation to types of treatment and place of care. However, uptake in England remains low.AimsTo examine the views of older, well, adults towards Advance Care Plans (ACPs) and planning for end-of-life care, in order to inform national policy decisions.MethodsA mixed methods approach was adopted, involving individual and mini-group qualitative interviews (n = 76, ages 45-85), followed by a quantitative survey (n = 2294, age 55+). The quantitative sample was based on quotas in age, gender, region, socio-economic grade, and ethnicity, combined with light weighting to ensure the findings were representative of England.ResultsKnowledge and understanding of advance care planning was low, with only 1% of survey respondents reporting they had completed an ACP for themselves. Common reasons for not putting wishes into writing were not wanting/needing to think about it now, the unpredictability of the future, trusting family/friends to make decisions, and financial resources limiting real choice.ConclusionWhilst advance care planning is seen as a good idea in theory by older, well, adults living in the community, there is considerable reticence in practice. This raises questions over the current, national policy position in England, on the importance of written ACPs. We propose that policy should instead focus on encouraging ongoing conversations between individuals and all those (potentially) involved in their care, about what is important to them, and on ensuring there are adequate resources in community networks and health and social care systems, to be responsive to changing needs.
| S-EPMC11338439 | biostudies-literature
Project description:BackgroundAdvance care planning (ACP) is highly relevant for people with early-stage dementia to communicate their care preferences for serious illness conditions with their family caregivers before they become mentally incapacitated.MethodsA multi-centre, quasi-experimental study was conducted to test the feasibility and acceptability of a theory-guided, dyadic ACP intervention ('Have a Say' programme) among participants with early-stage dementia-family caregiver dyads. The feasibility of the trial design, intervention procedures, subject recruitment and retention, and study instruments were assessed. Study outcomes were measured at baseline (T0), immediately after the intervention (T1), and at 1 month (T2) and 3 months post-intervention (T3). Acceptability of the intervention was determined by the satisfaction score, completion rate and qualitative interviews as process evaluation with a purposive sample of participants and ACP facilitators. Generalised estimating equations were performed to examine differential changes between groups over time, with covariates adjusted.ResultsSubject recruitment from five elderly community centres yielded a recruitment rate of 60% and resulted in 36 client-caregiver dyads. The intervention was acceptable to the dyads, with a mean satisfaction score of 4.4 out of 5 and completion rate of 94.4%. The attrition rates at T1, T2, and T3 were 8.3%, 13.9%, and 19.4%, respectively. The intervention group reported a significantly greater improvement in the readiness for ACP at T1, self-efficacy for ACP at T3, and dyadic concordance on end-of-life care preferences at all time points than the control group, but not on depressive symptoms. Family caregivers in the intervention group reported a significantly higher caregiving burden at T2 than the control group. The qualitative findings revealed that triadic involvement of and trusting relationships among the dyads and ACP facilitators, and documentation of clients' views are the programme strengths, while the structured format and discussion about medical issues posed implementation challenges.ConclusionsThis ACP intervention and trial design were feasible and acceptable to the dyads. Several refinements were identified, including adding a nurse-led group-based session for information giving, allowing flexibility in arrangement, and adding measure of ACP engagement of family caregivers. A rigorous trial to test the effects of the ACP intervention is warranted.Trial registrationRetrospectively registered on 14/08/2020 at clinicaltrials.gov (Identifier: NCT04513106).
| S-EPMC9979490 | biostudies-literature
Project description:Advance care planning (ACP) facilitates communication and understanding of preferences, nevertheless the use of ACPs in primary care is low. The uncertain course of dementia and the inability to communicate with the patient living with dementia are significant challenges for GPs to initiate discussions on goals of care.A cross-sectional survey, using a purposive, cluster sample of GPs across Northern Ireland with registered dementia patients was used. GPs at selected practices received the survey instrument and up to four mail contacts was implemented.One hundred and thirty-three GPs (40.6%) participated in the survey, representing 60.9% of surveyed practices. While most respondents regarded dementia as a terminal disease (96.2%) only 37.6% felt that palliative care applied equally from the time of diagnosis to severe dementia. While most respondents thought that early discussions would facilitate decision-making during advanced dementia (61%), respondents were divided on whether ACP should be initiated at the time of diagnoses. While most respondents felt that GPs should take the initiative to introduce and encourage ACP, most survey participants acknowledged the need for improved knowledge to involve families in caring for patients with dementia at the end of life and that a standard format for ACP documentation was needed.Optimal timing of ACP discussions should be determined by the readiness of the patient and family carer to face end of life. ACP discussions can be enhanced by educational strategies directed towards the patient and family carer that enable shared decision-making with their GP when considering options in future care.
| S-EPMC4410576 | biostudies-literature
Project description:BackgroundPersons with dementia are likely to require care from various health care providers in multiple care settings, necessitating navigation through an often-fragmented care system. This study aimed to create a better understanding of care transition experiences from the perspectives of persons living with dementia and their caregivers in Ontario, Canada, through the development of a theoretical framework.MethodsConstructivist grounded theory guided the study. Seventeen individual caregiver interviews, and 12 dyad interviews including persons with dementia and their caregivers, were recorded and transcribed verbatim. The data were coded using NVivo 10 software; analysis occurred iteratively until saturation was reached.ResultsA theoretical framework outlining the context, processes, and influencing factors of care transitions was developed and refined. Gaining an in-depth understanding of the complex care transitions of individuals with dementia and their caregivers is an important step in improving the quality of care and life for this population.ConclusionThe framework developed in this study provides a focal point for efforts to improve the health care transitions of persons living with dementia.
| S-EPMC8086075 | biostudies-literature