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

Introduction

Different types of dementia belong to the most challenging issues in current healthcare. A dementia diagnosis is associated with impaired functional abilities, reduced quality of life, psychosocial distress, and social isolation. The number of people with an Alzheimer’s disease diagnosis is estimated to reach close to 110 million in the year 2050. In the absence of prevention strategies and therapeutic interventions, an estimated one in 85 people will be living with Alzheimer’s.^1–4 Advance Care Planning (ACP) can be used to engage people with dementia and their family members in decision-making about future care.^5,6 In 2017, a large, multidisciplinary Delphi panel of ACP experts reached a consensus on an extended definition and a brief definition of ACP. ⁶ The brief definition is as follows:

Advance care planning enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate. ⁶

ACP for people with dementia has received attention in recent years. There are a number of recent studies highlighting barriers and facilitators as well as evaluating efficacy of ACP in dementia care and subsequent effects on end-of-life care. Most of these studies explore issues pertaining to the advanced stage of dementia and/or long-term care settings.^6,22,25–30 The field of research in ACP in early-stage dementia is less developed. According to van der Steen et al., ³¹ the community setting as well as patients’ and nurses’ perspectives are understudied. The need to determine the most relevant outcome measures for evaluating ACP is urgent^6,32 and even more so when it comes to ACP for people with dementia.

This study is the first in a PhD project with the aim to develop an ACP model for older people in the early phase of dementia and their family caregivers. The purpose of this study is to advance the state of knowledge about ACP 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 research questions are: what type of ACP interventions have been developed for people with early-stage dementia? How have people in the early stage of dementia and their family caregivers perceived and been affected by the interventions?

Design

The method used for the study is scoping review as first described by Arksey and O’Malley ³³ and further advanced by Levac, Colquhoun and O’Brien ³⁴ as well as by Peters et al. ³⁵ As ACP program evaluation reports were expected to provide part of the data material for the current study, a scoping review was determined to be the most relevant study method.

Study selection

In order to be included, papers and reports had to be in English and had to describe ACP interventions aimed at older people with dementia in a community setting. The study focused on older people with dementia as prevalence increases with age ³⁹ and young-onset dementia presents different challenges. ⁴⁰ The studies had to include feedback on the intervention from the people with dementia themselves. The papers had to have been published between January 2006 and June 2019. Studies in a non-Western context and studies focusing on specific ethnic groups were excluded. Studies focusing on Advance Directives only were also excluded. The wide perspective search of the electronic databases retrieved 4799 records after duplicates were removed. The titles of the records identified were screened by the first author for perceived relevance to the focus of the study. Three hundred and five abstracts were reviewed and evaluated independently by two of the authors. Seventy full-text articles and abstracts were assessed for inclusion in the review. In cases of ambiguity, all authors assessed the articles for inclusion to ensure ethical credibility. In the end, six eligible studies were identified as describing ACP interventions for early-stage dementia patients from the person with dementia’s point of view and thus were included. A flow chart describing the process is included in Figure 1.

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Figure 1.

Flow chart of the study selection.

Results

In the search for studies and reports describing ACP interventions for people with early-stage dementia, six scientific studies^41–46 were found (supplementary file 2). The six studies focused on the ACP intervention, the results of the intervention, and included feedback from the people with dementia on the ACP process. Despite the low number of studies identified, the studies describe a relatively wide range of intervention types.

Discussion

People with diminishing cognition is a group seldom heard and engaged in the research process. ⁴⁸ In dementia care, an approach that incorporates a human-centered design ⁴⁹ with an understanding of the challenges faced by patients and care staff is important to improve quality of care and vital to the development of ACP interventions for people with dementia and their family caregivers. In this scoping review, six studies describing ACP interventions for early-stage dementia patients have been charted and summarized. The studies describe a relatively wide range of intervention types such as counselor sessions,^43,46 seminars, ⁴² and video images, ⁴⁵ among others. The majority of the respondents (people with dementia and family caregivers) indicated satisfaction with the interventions used. This satisfaction can be seen in how the ACP interventions affected participants in mostly positive ways. People with dementia and family caregivers indicated satisfaction with the type of intervention used despite the significant differences between the interventions tested in the included studies.

When describing lessons learned from a pilot study of the patient-centered ACP interview, Briggs ⁵⁰ states that ‘listening is the intervention’. The person with dementia-family caregiver dyads experienced relief from having discussed the future as well as an improved relationship.^42–44 One of the ACP interventions explored the concept of family caregiver burden and ways of reducing that burden in a meaningful way. ⁴³ Family caregivers felt increased confidence about decision-making and felt better prepared for the future.^43,44 On the other hand, some of the people with dementia found the ACP discussion disheartening and some felt that it was difficult to discuss the future without knowing what the future will bring. ⁴⁴

Several studies have highlighted barriers to end-of-life care planning. Dening, Jones and Sampson ¹⁹ and Jones et al. ¹⁸ found that successful participation in an ACP intervention is affected by the ability of the person with dementia to consider their future and how life may change as the illness progresses. People with dementia may experience trouble when considering their future selves and make assumptions about retained independence. People are also reluctant to think about their own death or the death of loved ones. ⁵¹ Hirschman, Kapo and Karlawish ²⁶ identified remediable barriers to ACP discussions, including not knowing what to talk about, when to talk, and waiting until it was too late.

These factors of the care dyad and future care discussion begin to paint a picture of the optimal ACP structure. Findings show that dyads that are able to work together are able to create a preliminary care plan that is based on the care values of the person with dementia, and is balanced and realistic. ⁴³ The person with dementia may be able and willing to talk about future care with their family caregiver, but these talks do not always take place.^26,43,44 Dickinson et al. ²² noted that life-long conversations led to a confidence in unspoken knowledge to help inform future decision-making. However, according to research, family caregivers may lack full comprehension of what people with dementia see as important and how it relates to care.^43,52

The optimal structure for discussions of future care has been seen as the person with dementia–family caregiver dyad working as a team, supported by the work of e.g. Wilson, ⁵³ Kitwood, ⁵⁴ and Keady and Nolan. ⁵⁵ Harrison Dening ⁹ suggests that, in dementia care, a person-centered approach is not enough as it may cause conflict with the perspectives and preferences of a family caregiver and vice versa. Harrison Dening ⁹ goes on to suggest that a relationship-centered approach may be more appropriate. In a relationship-centered approach, the whole family may be included. Nolan et al. ⁵⁶ suggest a relationship-centered dementia care model where the nurse works together with the person with dementia and the family caregiver in a triad, in order to promote senses of belonging, security, continuity, purpose, achievement, and significance. A relationship-centered ACP intervention is also supported by the results of the Advanced Care Planning in Early Dementia (ACP-ED) intervention study by Poppe et al. ⁴⁴

Research has looked into various tools to be used in ACP in order to assist facilitators in achieving the optimal ACP structure. In their report, Butler et al. ⁵⁷ describe ACP decision aids as supportive of certain key components of the process, such as learning about what to expect, care options, reflecting on care options, and communicating preferences for future care. Butler et al. ⁵⁷ call for easily accessible, understandable, readable tools appropriate for patients working across various settings and with various facilitators. Volandes et al. ⁴⁵ conducted ACP research with the help of video images; a tool often conveying more understanding than a text describing the same phenomena. In the study which evaluated the video support tool, patients who viewed the video were more likely to choose a comfort-oriented approach compared to patients in the control group who received a verbal description instead. The participants also indicated that the video support tool was highly acceptable. ⁴⁵

There are several ethical challenges in in the ACP process for people with early-stage dementia. In March 2015, during the First WHO Ministerial Conference on Global Action Against Dementia, the importance of paying attention to people with dementia from a human rights perspective was emphasized. The dignity, needs, and wishes of people with dementia are to be respected in all phases of the illness. ⁵⁸ One of the ethical challenges is overcoming the traditionally paternalistic attitudes of healthcare workers. Community expectations for increased community care and improved palliative care for patients with chronic conditions have grown, leading to shifts in general ethical principles underlying healthcare decision-making. There is an increased respect for patient autonomy when it comes to making decisions about medical treatment and healthcare. ⁵⁹ However, Gastmans ²³ argues for an approach that goes beyond the principles of autonomy, nonmaleficence, beneficence, and justice, principles that are dominant model in medical ethics. Gastmans ²³ introduces a dignity-enhancing ethical framework where the vulnerability of people with dementia is seen as an extraordinary vulnerability, requiring carers to have the ethical attitudes of responsibility and competency.

Studies indicate that nurses and nurse practitioners are well positioned to initiate and lead ACP discussions as well as suited to participate in the development of ACP processes and models. In two of the studies included in this scoping review, it was suggested that outpatient memory clinics with properly trained and resourced staff were suitable for the initiation of ACP discussions.^42,44 However, the role of nurses and nurse practitioners was not explicated. In a scoping review of experiences of ACP for people with dementia conducted by Jones et al., ¹⁸ it was found that community nurses and palliative care specialists had the most experience of discussing and developing ACP and were therefore the most confident in initiating ACP. Yeun-Sim Jeong, Higgins and McMillan ⁶⁰ highlight the role of the nurse in ACP when describing the clinical nurse consultant role as a broker who acts as an intermediary in decision-making (between family and doctors), collects information, initiates interventions, educates clients and peers, and acts as client advocate. Cotter et al., ¹⁴ in turn, state that nurse practitioners have a responsibility to facilitate the ACP discussion with people in the early phase of dementia. However, a recent systematic review by Blackwood et al. ⁶¹ found that there is a need for increased focus on the training and education required for both nurses and other healthcare staff for ACP to become a routine part of clinical practice.

A challenge in dementia care is the lack of continuity in the contact with care professionals. As the dementia progresses and the care needs of the person with dementia increases, the place of care changes from outpatient memory clinics to assisted-living facilities and nursing homes. In this type of dementia care structure, the person with dementia and his/her family caregiver will encounter many nurses and doctors along the illness trajectory who are not necessarily familiar with the person with dementia and his/her family and their care preferences and wishes for end-of-life care. A focus on the re-structuring of dementia care to ensure care contact continuity is essential.

In summary, initiatives to develop a standardized, semi-structured, and simple tool for systematic ACP discussions with this patient group and their family caregivers are required. Furthermore, the professional group responsible for these discussions should be explicated. The number of studies identified that have included feedback from people with dementia was low. This indicates the need for further studies that include people with dementia in the early phase of the illness trajectory. The gaps also include a lack of validated tools to evaluate ACP intervention feasibility and acceptability from the perspective of the people with dementia themselves. Studies that focus on outcome and process evaluations are equally essential; however, there is a lack of validated evaluation tools. Examples of ACP outcome evaluation studies include a randomized controlled trial where Detering et al. ⁶² investigated the impact of ACP on end-of-life care in legally competent elderly patients. The primary outcome measure was whether the patient’s end-of-life wishes were known and respected. Other outcome evaluations such as monitoring emergency admissions to hospital after ACP in a nursing home setting have been conducted as well. ⁶³ Klingler et al. ⁶⁴ studied the cost implications of ACP and the associated ethical conflicts. In dementia care, ACP outcome evaluations which focus on the satisfaction of the family caregiver should be emphasized as the person with end-stage dementia is no longer able to communicate his or her satisfaction with the care.

The current study’s strengths are the description of ACP interventions aimed at older people with early-stage dementia as well as its focus on the experience of the person with dementia and, in extension, his/her family caregiver. The number of included studies was low due to the stringent inclusion criteria, which limited the studies to those where the feedback from the people with dementia themselves was reported. The studies were also limited to English-speaking, Western countries. The number of participants in the identified studies was low as most were qualitative studies. Pilot interventions were tested and evaluated. Only one of the studies had a randomized controlled trial design, ⁴⁵ while another had a two-group comparison design. ⁴¹

Conclusion

There is a general consensus that ACP in dementia care can be a valuable way to alleviate suffering for both people with dementia and family caregivers. ACP for dementia patients provides an opportunity for relationship-centered triad care that includes the person with dementia, the family caregiver, and professional care staff. Staff competence is of great significance in ACP for all patient groups; even more so in dementia care where the diminishing cognition, reduced decision capacity, and extraordinary vulnerability associated with the illness provide significant ethical challenges. The ACP process should be organized as a continuous collaboration between care professionals, people with dementia and their family caregiver. The ethical challenges, the complexity of ACP program or intervention implementations in early-stage dementia care, and the development of process and outcome evaluation measures need further study. The results of the scoping review provide a starting point for healthcare organizations, such as memory clinics, to develop a structure for ACP discussions with people with dementia and their family caregivers.

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