Marcel Arcand

Decision Making at the End of Life in Dementia: How Family Caregivers Perceive Their Interactions With Health Care Providers in Long-Term-Care Settings

Makingend-of-lifecare decisions in the context of dementiais complex. As people with advanced dementia are in capable of deciding about their own care, family caregivers often become involved with health care providers in the decision-making process to ensure the best care for their loved one. Using a grounded theory approach, the experience of family caregivers in making such end-of-life care decisions was explored. Twenty-four caregivers were interviewed. The results show that caregivers evoke five dimensions when considering these decisions. One dimension, the relationship with health care providers, emerged as vital to their experience. Four elements of this relationship are presented in this article: quality of the relationship, frequency of contact, congruence of their values and beliefs with those of health care providers, and the level of trust. In an era that promotes partnership with families in long-term-care settings, care standards are needed in order to guarantee family participation in achieving quality dementia care.

End-of-life decision making in dementia The perspective of family caregivers

Family caregivers are often required to make treatment decisions on behalf of institutionalized loved ones with advanced-stage dementia. Deciding on appropriate treatment is a complex process which can be difficult for families. This grounded theory study examined the concerns of family caregivers regarding their relative’s care and explored how end-of-life treatment decisions are made. Data were collected from in-depth interviews with 24 caregivers and analysed using constant comparison and dimensional analysis, resulting in a substantive theory of decision making. The role of decision maker from the perspective of family caregivers is described. The relative’s level of quality of life emerged as central to decision making. Four end-of-life phases were identified in which treatment intensity was influenced by the caregivers’ evaluation of quality of life. The results highlight the importance of including family caregivers’ experiences in working toward caregiver/medical team consensus around treatment decisions at the end of life in dementia.

Physicians' and nurses' perceived usefulness and acceptability of a family information booklet about comfort care in advanced dementia

BACKGROUND Families of patients with advanced dementia need to be informed about the course of the dementia and comfort care. Conditional for health care providers educating families is their knowledge and comfort in family education. METHODS Perceived usefulness and acceptability of a Canadian family booklet explaining possible complications and comfort care in dementia was assessed by physicians and nurses caring for dementia patients in 14 nursing homes in Lombardy, Italy and 21 in the Netherlands. The practitioners received a questionnaire and translated versions adapted to local practice where needed. In 10 of 21 Dutch homes, physicians evaluated only the original Canadian version in English. A 15-item scale assessed the booklets acceptability, for example, to inform families, or for educational purposes. Perceived usefulness referred to proportion of families of dementia patients for whom the booklet would be useful. A total of 168 evaluations were available for multivariable regression analyses. RESULTS The practitioners anticipated that the booklet would be useful for most families. Evaluation of the Dutch translation of the booklet was similar to the English version. Country (Netherlands) and profession (nurses) were independently associated with better acceptability. Usefulness was perceived as better by Italian respondents and nurses, but only in analyses unadjusted for the higher educational needs of these respondents. CONCLUSION Overall, the concept of written information on comfort care was appreciated by practitioners of European countries differing in attitudes toward end-of-life care. A booklet may help practitioners, and in particular nurses, in providing comfort care for dementia patients and their families.

Development of a practice guideline for optimal symptom relief for patients with pneumonia and dementia in nursing homes using a Delphi study

This study aimed to develop a practice guideline for a structured and consensus‐based approach to relieve symptoms of pneumonia in patients with dementia in nursing homes.

Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation

Introduction Families of patients with dementia may need support in difficult end-of-life decision making. Such guidance may be culturally sensitive. Methods To support families in Canada, a booklet was developed to aid decision making on palliative care issues. For reasons of cost effectiveness and promising effects, we prepared for its implementation in Italy, the Netherlands and Japan. Local teams translated and adapted the booklet to local ethical, legal and medical standards where needed, retaining guidance on palliative care. Using qualitative content analyses, we grouped and compared adaptations to understand culturally sensitive aspects. Results Three themes emerged: (1) relationships among patient, physician and other professionals—the authority of the physician was more explicit in adapted versions; (2) patient rights and family position—adding detail about local regulations; and (3) typology of treatments and decisions. Considerations underlying palliative care decisions were detailed (Dutch and Italian versions), and the Japanese version frequently referred to professional and legal standards, and life-prolongation was a competing goal. Text on artificial feeding or fluids and euthanasia was revised extensively. Conclusions Providing artificial feeding and fluids and discussing euthanasia may be particularly sensitive topics, and guidance on these subjects needs careful consideration of ethical aspects and possible adaptations to local standards and practice. The findings may promote cross-national debate on sensitive, core issues regarding end-of-life care in dementia.

Scientific and ethical features of English-language online tests for Alzheimer's disease

Freely accessible online tests for the diagnosis of Alzheimers disease (AD) are widely available. The objective of this study was to evaluate these tests along three dimensions as follows: (1) scientific validity; (2) human‐computer interaction (HCI) features; and (3) ethics features.

A Japanese booklet about palliative care for advanced dementia in nursing homes

BACKGROUND A Canadian guide for nursing home staff on comfort care for dementia has been translated and adapted for use in Japan. The present study piloted educational intervention for nursing home staff using the Japanese comfort care booklet. METHOD Some 61 nursing home staff (nurses and other care workers) completed a session that included pre-assessment, a 30-minute seminar using the comfort care booklet, post-assessment, and a one-hour debriefing meeting. A Japanese version of the questionnaire on palliative care for advanced dementia (qPAD) scale was used to assess knowledge and attitudes toward palliative care for advanced dementia. RESULTS The participants demonstrated a significant increase in knowledge (mean score, 14.3 to 15.1/23, t (60) = 2.35, p=0.011) and attitudes (43.8 to 45.2/60, t (60) = 2.51, p = 0.015) toward palliative care for advanced dementia from pre-assessment to post-assessment. CONCLUSION The educational intervention using the Japanese comfort care booklet may have improved nursing home staffs perspectives on palliative care for advanced dementia.

Reliability of health-related quality-of-life assessments made by older adults and significant others for health states of increasing cognitive impairment

BackgroundOlder adults are encouraged by many organizations to engage in advance care planning in the event of decisional incapacity. Planning for future health care often involves anticipating health-related quality of life (HRQoL) in states of reduced cognitive functioning. No study has yet examined whether anticipated HRQoL is stable over time. The accuracy with which significant others can predict how an older adult envisions HRQoL in a future state of cognitive impairment is also unknown. We investigated the extent to which health-related quality-of-life ratings made by older adults and designated proxies for health states of increasing cognitive impairment are consistent over time and agree with each other.MethodsResults are based on HRQoL ratings made on a 5-point Likert scale by 235 community-based elder-proxy dyads on three occasions. Ratings were obtained for the older adult’s current health state as well as under the assumption that he/she had a mild to moderate stroke, incurable brain cancer or severe dementia. Data were analyzed using both traditional approaches (e.g., intraclass correlation coefficients, Bland-Altman plots) and the theory of generalizability.ResultsWe found ratings to be reasonably consistent over time and in good agreement within dyads, even more so as implied cognitive functioning worsened. Across health states, ratings over time or within elder-proxy dyads were no more than one category apart in over 87% of cases. Using the theory of generalizability, we further found that, of the two facets investigated, rater had a greater influence on score variability than occasion.ConclusionsThese findings underscore the importance of discussing health-related quality-of-life issues during advance care planning and involving designated proxies in the discussion to enhance their understanding of the role that HRQoL should play in actual decision-making situations. Medical decision-making may be influenced by healthcare providers’ and family members’ assessments of an incapacitated patient’s health-related quality of life, in addition to that of the designated proxy. Future studies should investigate whether these two groups of individuals share the views of the patient and the designated proxy on anticipated HRQoL.

Quasi-experimental evaluation of a multifaceted intervention to improve quality of end-of-life care and quality of dying for patients with advanced dementia in long-term care institutions:

Background: Improvement in the quality of end-of-life care for advanced dementia is increasingly recognized as a priority in palliative care. Aim: To evaluate the impact of a multidimensional intervention to improve quality of care and quality of dying in advanced dementia in long-term care facilities. Design: Quasi-experimental study with the intervention taking place in two long-term care facilities versus usual care in two others over a 1-year period. The intervention had five components: (1) training program to physicians and nursing staff, (2) clinical monitoring of pain using an observational pain scale, (3) implementation of a regular mouth care routine, (4) early and systematic communication with families about end-of-life care issues with provision of an information booklet, and (5) involvement of a nurse facilitator to implement and monitor the intervention. Quality of care was assessed with the Family Perception of Care Scale. The Symptom Management for End-of-Life Care in Dementia and the Comfort Assessment in Dying scales were used to assess the quality of dying. Participants: A total of 193 residents with advanced dementia and their close family members were included (97 in the intervention group and 96 in the usual care group). Results: The Family Perception of Care score was significantly higher in the intervention group than in the usual care group (157.3 vs 149.1; p = 0.04). The Comfort Assessment and Symptom Management scores were also significantly higher in the intervention group. Conclusions: Our multidimensional intervention in long-term care facilities for patients with terminal dementia resulted in improved quality of care and quality of dying when compared to usual care.

Should Medical Assistance in Dying Be Extended to Incompetent Patients With Dementia? Research Protocol of a Survey Among Four Groups of Stakeholders From Quebec, Canada

Background Alzheimer’s disease and related disorders affect a growing number of people worldwide. Quality of life is generally good in the early stages of these diseases. However, many individuals fear living through the advanced stages. Such fears are triggering requests for medical assistance in dying (MAiD) by patients with dementia. Legislation was recently passed in Canada and the province of Quebec allowing MAiD at the explicit request of a patient who meets a set of eligibility criteria, including competence. Some commentators have argued that MAiD should be accessible to incompetent patients as well, provided appropriate safeguards are in place. Governments of both Quebec and Canada are currently considering whether MAiD should be accessible through written requests made in advance of loss of capacity. Objective Aimed at informing the societal debate on this sensitive issue, this study will compare stakeholders’ attitudes towards expanding MAiD to incompetent patients with dementia, the beliefs underlying stakeholders’ attitudes on this issue, and the value they attach to proposed safeguards. This paper describes the study protocol. Methods Data will be collected via a questionnaire mailed to random samples of community-dwelling seniors, relatives of persons with dementia, physicians, and nurses, all residing in Quebec (targeted sample size of 385 per group). Participants will be recruited through the provincial health insurance database, Alzheimer Societies, and professional associations. Attitudes towards MAiD for incompetent patients with dementia will be elicited through clinical vignettes featuring a patient with Alzheimer’s disease for whom MAiD is considered towards the end of the disease trajectory. Vignettes specify the source of the request (from the patient through an advance request or from the patient’s substitute decision-maker), manifestations of suffering, and how close the patient is to death. Arguments for or against MAiD are used to elicit the beliefs underlying respondents’ attitudes. Results The survey was launched in September 2016 and is still ongoing. At the time of submission, over 850 respondents have returned the questionnaire, mostly via mail. Conclusions This study will be the first in Canada to directly compare views on MAiD for incompetent patients with dementia across key stakeholder groups. Our findings will contribute valuable data upon which to base further debate about whether MAiD should be accessible to incompetent patients with dementia, and if so, under what conditions.