Formulating recommendations to improve care for persons living with dementia: deliberative dialogues with multiple stakeholders in the province of Quebec, Canada

Abstract

Background

Persons living with dementia and their care partners encounter many challenges within the health and social care system, including lack of information, support, counselling, and access to community services, as well as significant staff turnover in home care services. The objective of this study was to work with multiple stakeholders to formulate relevant and feasible recommendations to improve care for persons living with dementia and their care partners in Quebec, Canada.

Methods

We conducted deliberative dialogues in the context of a large mixed methods study on the care of persons living with dementia and care partners. First, we organized two deliberative dialogues with care partners to formulate recommendations informed by the quantitative and qualitative results of the large study. These recommendations were further discussed in a third deliberative dialogue focused on the prioritization of relevant and feasible recommendations by clinicians, health project managers, and decision-makers. We performed a thematic analysis of the data using a multi-level framework: structural, organizational, provider, and patient perspectives.

Results

Participants formulated 14 recommendations. Two structural-level recommendations included fighting ageism and ensuring the same access to services in the whole province. Three organizational-level recommendations involved improving interdisciplinarity collaboration, improving access and follow-up in primary care, and adapting emergency departments. Additionally, two organizational-level recommendations were specific to healthcare crisis management (such as the COVID-19 pandemic): ensuring both the regular communication and the flexibility of implemented rules. Four provider-level recommendations encompassed providing more training on dementia, offering more training on levels of care, reviewing the relationship-based approach in training programs, and revising and optimizing medications. There were three patient-level recommendations including strengthening partnerships with persons living with dementia and care partners, guaranteeing personalized services and care, and reinforcing support for care partners.

Conclusion

The deliberative dialogues enabled us to formulate relevant recommendations based on research evidence, the lived experience of care partners, and the expertise of clinicians, health project managers and decision-makers. The results revealed several recommendations that will help mitigate the challenges faced by persons living with dementia and care partners in the health and social care system by informing policies and practices.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12913-024-11565-0.

Background

Dementia is recognized as a public health priority by the World Health Organization [1]. In Quebec, Canada, 170 000 individuals were living with dementia in 2023, and by 2050, this number is expected to reach 360 000 [2]. There has been a growing desire to improve the quality of life of persons living with dementia and their informal care partners. Canada implemented its first national dementia strategy in 2019 [3] and Quebec implemented its Quebec Alzheimer Plan [4] with the goal of valuing and supporting persons with dementia and care partners, optimizing their care, and preventing dementia.

However, the structure of the healthcare system is perceived as complex, acting as a barrier to the optimal utilization of existing services, and access to such services is insufficient [5, 6]. Some family physicians and other professionals involved in dementia case management lack expertise in dementia [5, 6]. There are communication difficulties between primary care professionals and specialists, resulting in inefficiencies in service delivery [5, 6]. Persons living with dementia and their care partners still face challenges in the health and social care system, including difficulties in receiving diagnosis, accessing post-diagnosis services [7], and obtaining clear information about available services [8]. Their needs are not always met as care partners lack social work support, counselling, information on dementia, and psychotherapy [9, 10]. Additionally, persons living with dementia and care partners encounter difficulties in accessing community services promptly [9]. Care partners lack support from the health and social care system and there is a lack of information provided about the evolution of the disease, the next steps in care, and the legal steps for the approval of a mandate in case of incapacity [11]. In addition, many care partners experience difficulties during their relatives’ transition into institutional placement [12]. They desire a smoother transition, with better information and preparation, including regular updates on waiting times for a new institution [12].

Participatory research has proven to be an effective way of initiating change [13]. Indeed, the potential for social change and sustainable impact increases as stakeholders become more involved in the research process [13]. Deliberative dialogues are a participatory research method used in the healthcare sector to improve public understanding of complex health care issues and healthcare priorities [14]. This method is recognized as powerful for involving diverse stakeholder perspectives [15] and for facilitating actionable recommendations [16]. To ensure that future healthcare changes address challenges faced by persons living with dementia and care partners, several stakeholders need to be involved to produce recommendations that will be implemented in policy, programs, and services.

Methods

Aim

The objective of this study was to involve care partners, clinicians, health project managers, and decision-makers in the formulation of feasible and relevant recommendations to improve care for persons living with dementia and their care partners in Quebec, Canada.

Context

This project represents the final phase of a mixed-method study investigating the care for persons living with dementia and their care partners during the COVID-19 pandemic and beyond in four Canadian provinces [17]. This mixed-method study was rooted in a participatory approach (including patient engagement) [18], in which 16 persons with lived experience (persons living with dementia or care partners) were engaged as co-researchers in the research process from the beginning. Three phases were carried out in the mixed-method study. Phases 1 and 2 revealed many issues in terms of access and use of services by persons living with dementia and care partners (quantitative results [19]) and in terms of respect for human rights (qualitative results [20]). These issues were pre-existing before the COVID-19 pandemic and exacerbated during the event [21]. For the final phase, the results of phases 1 and 2 were taken into account in deliberative dialogue workshops to formulate recommendations for improving care and services for persons living with dementia and their care partners in Quebec. We focused on the province of Quebec because healthcare systems are provincially regulated in Canada [22]. The recommendations could guide programs and policies in Quebec, including the Alzheimer’s Plan, and Canada.

Design and setting

The deliberative process is recognized as the best practice method to involve public participation [15]. This process consists of two components: deliberation and dialogue. Deliberation can be defined as a social process involving individuals engaged in a discussion within an environment that is respectful of the arguments presented by all parties [15]. Deliberation aims to transform the values and preferences of each individual into a collective decision-making outcome. A dialogue is a conversation that allows for the flow of meaning between several individuals, thereby facilitating the emergence of new understanding [15]. We decided to conduct deliberative dialogue workshops because this group process is well-suited for bringing together multiple stakeholders and can help to integrate and interpret scientific and contextual data to develop evidence-based recommendations for informing practices and policy development [23–26]. This method of data collection was appropriate for our aim of formulating actionable recommendations to improve the care of persons living with dementia and their care partners. Deliberative dialogue also welcomes similar and opposing points of view rather than consensus [25], which is beneficial for us because deliberative dialogues bring together individuals with different responsibilities or decision-making authority [24].

In the province of Quebec, we thus organized three online deliberative dialogue workshops. They were conducted in two phases with an emphasis on the voice of persons with lived experience. First, we organized two deliberative dialogues with care partners, where we presented the quantitative and qualitative results of our project, to derive recommendations from them. An overview of the results of the COVID-19 study is available online [27]. The third deliberative dialogue focused on the identification of relevant and feasible recommendations by clinicians, health project managers, and decision-makers, based on the recommendations of care partners.

Participant recruitment

For recruitment, we used a purposive sampling strategy [28]. We aimed to recruit French speaking care partners who had personal experiences using health and social care services. We reached out to care partners who had participated in interviews during the qualitative study. Care partners who were co-researchers in the large COVID-19 study were also invited. The patient partners who were co-researchers in the large COVID-19 study were not invited because they came from other provinces and only spoke English. We recruited persons involved in the implementation of the Quebec Alzheimer Plan, including different types of clinicians (nurses, family physicians, geriatricians), health project managers, and decision-makers [29]. All participants were offered a $50 CAD gift card as compensation for their participation. Prior to the deliberative dialogues, we emailed invitations to potential participants. Only those who agreed to participate and signed the consent form participated in the deliberative dialogues.

Data collection

The two deliberative dialogues with care partners took place on October 2nd and 3rd, 2023. The third deliberative dialogue with persons involved in implementing the Quebec Alzheimer Plan took place on October 27th, 2023. Two weeks before the first two deliberative dialogues, we sent textual and video summaries presenting the quantitative and qualitative results of the COVID-19 study to care partners. An overview of the results was also presented at the start of the online deliberative dialogue [30]. Both deliberative dialogues were professionally facilitated by a public health physician, a French-speaking woman with expertise in deliberative dialogues (IV). The facilitator used a semi-structured guide asking participants to identify recommendations that could be implemented in personal homes, assisted living, and nursing homes. Participants were also encouraged to talk about what would improve primary care, emergencies, hospitalizations, and respect for human rights (see Supplementary Material: Interview guide deliberative dialogue 1 and 2). Two co-authors (ALC and DCS) were also present in deliberative dialogues and took care of the logistical aspects (note-taking, observations, sharing slides, managing comments in the chat, and checking the recording).

A week before the third deliberative dialogue, a summary of the recommendations made by the care partners was sent to persons involved in implementing the Quebec Alzheimer Plan (see Supplementary Material: Recommendations made by the care partners). An overview of the recommendations was also presented at the beginning of the third deliberative dialogue. This third and final deliberative dialogue was facilitated by a research assistant, a French-speaking woman with a master’s degree in gerontology (ALC). She possesses expertise in qualitative research and conducted interviews with care partners in Quebec as part of the qualitative study [17, 20]. A co-author (DCS) offered logistical support as in the previous deliberative dialogues. Participants were encouraged to comment on the proposals of care partners concerning general recommendations and recommendations on assisted living and nursing homes, primary care, home care services, emergencies, and hospitalizations (see Supplementary Material: Interview guide deliberative dialogue 3).

In each deliberative dialogue, the importance of confidentiality was explained using the Chatham House rule, which encourages inclusive and open dialogue in meetings and states that the identity of the person providing information cannot be disclosed [23]. Deliberative dialogues were recorded for transcription and analysis.

Data analysis

The recordings were transcribed by a private transcription company. We conducted a hybrid thematic analysis [31] of the data, starting with an inductive approach, followed by a deductive one. A research assistant (ALC) familiarized herself with the data, generated initial codes inductively with NVivo 12, and then categorized themes deductively [32, 33] using a multi-level framework [34]. Definitions of the categories of the framework are provided in Table 1. Themes common to all stakeholders and specific to certain ones were created. These were discussed and reviewed with team members (IV, DCS). Disagreements were resolved through discussions, and the themes were approved by all team members.

Table 1.

Framework adapted from Chaudoir et al. (2013)

Structural	The structural-level represents the external structure, encompassing the socio-cultural context and community in which organizations are located. It includes the physical environment, political and social climates, public policies, economy, and infrastructures
Organizational	The organizational-level refers to the aspects of the organization where innovations are implemented. It encompasses an organization’s values, leadership effectiveness, and employee satisfaction
Provider	The provider-level is the constructs of individuals who are in contact with patients and who implement the innovation with a patient, including their attitudes towards evidence-based practices
Person with dementia and care partner	The person with dementia and care partner-level refers to their characteristics, such as motivations, personality traits, and health beliefs, which can have an impact on the implementation of results

Results

Twenty participants – ten care partners (P), four clinicians (C), three health project managers (M), and three decision-makers (D), all French speaking – participated in the deliberative dialogue workshops (see Table 2 for participants’ characteristics).

Table 2.

Sociodemographic data of stakeholders included in the study (n = 20)

Participant	Gender	Role or professional background	Experience
Participants in the deliberative dialogues 1 and 2
P1	Woman	Care partner/ Retired	Caregiver for her aunt with dementia in a nursing home
P2	Woman	Care partner/ Retired	Caregiver for her mother-in-law with dementia in a senior housing
P3	Woman	Care partner/ Retired	Caregiver for her dad who has dementia at home
P4	Man	Care partner/ Retired	Caregiver for his wife with dementia in a nursing home
P5	Woman	Care partner/ Retired	Caregiver for her mother with dementia in a nursing home
P6	Woman	Care partner/ Lawyer	Caregiver for her father with dementia in a nursing home
P7	Woman	Care partner/ Dentist	Caregiver for her father with dementia in a private assisted living
P8	Woman	Care partner/ Retired Quebec government manager	Caregiver for her mother
P9	Woman	Care partner/ Retired	Caregiver of her spouse with dementia
P10	Man	Care partner/ Strategic Advisor	Caregiver of his aunt with dementia in a private assisted living
Participants in the deliberative dialogue 3
C1	Woman	Clinician nurse	Regional advisor for the Quebec Alzheimer Plan. She works for the team in charge of behavioral and psychological symptoms of dementia
C2	Woman	Gerontopsychiatrist and professor	Involved in the Quebec Alzheimer Plan since the beginning
C3	Man	Family physician	Involved in the Quebec Alzheimer Plan since the beginning
C4	Man	Physician and professor	Involved in the Quebec Alzheimer Plan since the beginning
M1	Woman	Project manager	Involved in the Quebec Alzheimer Plan since the beginning
M2	Woman	Project manager	She works for Centre d’excellence sur le vieillissement de Québec du CIUSSS de la Capitale-Nationale
M3	Woman	Project manager	Involved in the Quebec Alzheimer Plan
D1	Woman	Decision-maker	Director of a provincial community organization
D2	Woman	Decision-maker	Responsible of the Alzheimer Plan at the Ministry of Health and Social Services
D3	Woman	Decision-maker	Responsible of care for elderly at the Ministry of Health and Social Services

P Persons with lived experience (care partners), C Clinicians, M Health Project Managers, D Decision-makers

Our analysis generated recommendations on four levels: 1) Structural, 2) Organizational, 3) Provider, 4) Person with dementia and care partner. Participants identified several recommendations to improve the care of persons living with dementia and care partners. Figure 1 presents the results and depicts our current conceptual framework. Following the original framework [34], these recommendations represent multiple levels (the structural, organizational, patient, provider) from micro-level to macro-level. A specific recommendation would be implemented for persons with dementia and care partners by providers who are nested in an organization (e.g., clinical care settings) and a broader structural context (e.g., healthcare system).

Fig. 1.

Recommendations to improve the care of persons living with dementia and care partners

Adapted from Chaudoir et al. 2013 [34]

Structural-level recommendations

Two recommendations concerning the socio-cultural context and the community were formulated by participants. The recommendations concentrated on combating ageism and guaranteeing equal access to services throughout the province.

Fight ageism

One recommendation common to all four types of participants was to raise awareness of systemic ageism and to integrate it into policies in order to promote respect for the rights of older adults. The manifestations of ageism must be recognized and defined, so that ageism is no longer tolerated in society. For instance, one clinician pointed out that ageism should be addressed on the same level as racism, emphasizing the need to raise awareness of it.

"We talk a lot about systemic racism. I think we also need to put ageism on an equal footing. We see it a lot in government decisions. We saw it a lot with COVID. I think people don't realize how deeply ingrained it is. I also believe there is ageism that is internalized even among older individuals, as they may not want to go to a facility to avoid being with 'old people'. " C2.

Along the same lines, it was shared that there is a need to establish a societal consensus on the social values we wish to integrate in order to live in a more inclusive society. Reaching a consensus would help dispel the fear associated with receiving a diagnosis.

"Agreeing all together, with what values are we working? We talked about combating ageism. Going further to counter ageism could also mean a perspective of inclusion of these individuals. As a society, we will be inclusive, we will not be afraid to state a diagnosis because that person will still be part of the community." D2.

Ensure the same access to services in the whole territory

Participants (P, C) also recommended addressing regional inequalities to promote more equitable access to healthcare. There are still many disparities between Quebec’s regions, especially underserved regions where access to homecare services, quality of care, and professional workloads are problematic. For instance, one care partner highlighted the discrepancies between patient/nurse ratios from one region to another.

"In one area, it's one nurse for 25 patients; in another area, it's one nurse for 100 patients. It's really uneven. If we talk about equity, there is an issue in that regard. The population of Quebec is increasingly aging, so there is work to be done in this area." P10.

Organizational-level recommendations

Five recommendations were formulated with regard to the organization of the health and social care system. The recommendations pertained to enhancing interdisciplinary collaboration, optimizing access and follow-up in primary care, adapting emergency services, assuring regular communication during health care crises such as the COVID-pandemic, and guaranteeing the flexibility of the rules implemented during health care crises such as the COVID-pandemic.

Improve interdisciplinary collaboration

Participants (P, M, D) emphasized the need for an interdisciplinary approach to enhance communication among professionals and healthcare facilities to ultimately improve care transitions between services or settings for persons living with dementia. For instance, two health project managers mentioned the need for better communication between professionals and patients and support for people in accessing the service offerings. They pointed out that although care transitions and interdisciplinary collaboration are priorities of the Quebec Alzheimer Plan, numerous challenges persist and ongoing efforts are required to enhance the Plan.

"What we observe is that there are often gray areas where the individual is left somewhat on their own: either there are waiting lists, or people do not communicate with each other. […] We are in phase three, but there is still a lot of work to be done in this regard and to promote better collaboration among different entities." M3.

Improve access and follow-up in primary care

Participants (P, M) also recommended improving access to primary care appointments for persons living with dementia, especially for those without a family physician (orphans), and improving follow-up care. For example, one clinician reported that the Primary Care Access Point, known as the Guichet d’accès à la première ligne, is beneficial for orphans seeking appointments with a family physician and is well-suited for acute problems. However, it is not adapted for persons with cognitive decline who require assessment and diagnosis. Additionally, it is not adapted to the follow-up care of persons living with dementia, as they need continuity of care with the same family physician to manage the numerous comorbidities they have.

"It's fantastic when patients have access to primary care. The problem is all the orphan patients. And God knows that myself and my geriatrician colleagues, we have one after another. So, it's certain that the Primary Care Access Point helps in a certain way when there are acute problems, but we agree that it is not at all suitable for the diagnosis and management of chronic diseases." C2.

Adapt emergency services

Participants (P, C, D) pointed out the need to rethink emergency departments, as they are not adapted to persons living with dementia. To illustrate, a care partner shared her unfavorable experiences while accompanying her mother-in-law and father living with dementia during an emergency room visit. Her relatives were given numerous medications there, including Haldol, while they were in a state of delirium. She longed for a different approach, such as a specialized care unit tailored to persons with cognitive impairment in emergency departments.

"Maybe an Alzheimer's unit in the emergency, because it's not the same for someone with Alzheimer's entering the emergency room compared to a person with medical issues entering the emergency room; it's really specific." P5.

In addition, participants pointed out that some assisted living homes force persons living with dementia to go to the emergency department without their consent or the consent of their care partner. For instance, one care partner highlighted that persons without cognitive impairment have the option of refusing and signing a consent form, which then allows the paramedics to conclude their intervention and leave without hospital transfer. However, she indicated that, in some cases, persons living with dementia and the care partner cannot refuse hospitalization.

"In assisted living, and currently with certain regions, the way the directive is written and applied, there is a mandatory transfer to the hospital in some cases, such as falls, for example. The person or their legal representative is told that they do not have the right to refuse transportation." P8.

Ensure regular communication during health care crises such as the COVID-pandemic

Participants (P, M) recommended considering how to regularly inform care partners of the instructions issued by the assisted living or nursing homes. They mentioned that the dissemination of information to family caregivers in assisted living and nursing homes was frequently inadequate. Furthermore, they found that guidelines and visitation rights underwent significant changes over the course of the pandemic. They desired for these facilities to establish a functional communication system so that families can be contacted regularly and be made aware of the constantly changing rules and procedures.

"I think the communication system should be developed well before the next pandemic to avoid situations where you end up with voicemail when you call, and there's no one to answer because we understand that they are busy doing something else. It is up to them to plan it all." P1.

Ensure the flexibility of the rules implemented during health care crises such as the COVID-pandemic

Finally, in the event of a new pandemic, participants (P, C) recommended flexibility in the rules laid down. In particular, care partners play an essential communication role between settings and services and act as advocates to ensure their loved ones receive all the necessary care. This is why they should be allowed to visit assisted living and nursing homes and accompany persons living with dementia to health appointments. For instance, one clinician stressed the need to reflect as a society on the reasons why the perspectives of family caregivers had to be considered so much to monitor the rights of individuals in nursing homes and whether better quality of care would reduce this necessity.

"Even before the pandemic, it's challenging when there are no family caregivers. Family caregivers act as watchdogs for the protection of the rights of the person in the nursing home. From the moment it was announced that family caregivers could no longer go to the nursing home, I thought, 'this is going to be catastrophic.' I believe it's something that needs to be taken into account." C1.

Provider-level recommendations

Stakeholders created four recommendations for the provider level. The recommendations concentrated of four key areas: enhancing dementia training, reinforcing level-of-care training, revising the relational approach in training programs, and reviewing and optimizing medications.

Provide more training on dementia

Clinicians and decision-makers have highlighted the positive changes that have taken place in primary care since the implementation of Quebec Alzheimer’s Plan, changes that need to continue. Primary care professionals have been better trained in identifying, assessing, and diagnosing dementia, leading to improved dementia management in primary care.

"In regards to the Alzheimer's Plan [in family medicine groups], we have certainly made a lot of progress since it was initiated. We are much better at identifying, assessing, and diagnosing." C1

In addition, in some regions, participants perceived improvements at the hospital level. For instance, a health project manager mentioned the ‘Geriatric Emergency Management Nurses’ initiative, an ongoing pilot project implemented a few years ago in one territory, where specialized geriatric nurses are present in some emergency departments. This initiative was perceived to have the potential to positively impact the organization of emergency department services.

"They call it the GEM Nurses project. It's a nurse who is well-equipped and trained in relation to health issues, the various problems that the geriatric population may encounter. She takes charge, ensuring a thorough assessment of needs and establishing connections with partners if necessary." M3.

Participants, however, felt that there was still room for improving dementia training for professionals and care providers who are in direct contact with persons living with dementia and care partners. All types of stakeholders recommended offering more dementia training in various settings, such as nursing homes, assisted living homes, home care services, respite care, and private home care agencies. They perceived a lack of knowledge about dementia in general among many health and social care professionals. For example, one care partner stated:

"In my father's assisted living, I feel that the people there have little or no training. Often, they are not familiar with Alzheimer's disease. They do not approach it in a good way. I believe they should have much more training." P7.

Provide more training on levels of care

Participants (P, M) also recommended more training on levels of care, especially levels C and D, which are not well-understood. Levels of care refer to a person’s wishes and values and are goals of care that result from a discussion between the physician, the patient, and their legal representative [35]. Level C ensures comfort as a priority over prolonging life, while level D ensures comfort without prolonging life [36]. One manager felt that the understanding of definitions of level of care among care teams, patients, and family caregivers was not synchronized.

"There is training to be provided, especially on care levels C and D. Because it seems that when a user or a family chooses a level of care D, there is a tendency to feel somewhat condemned. Nothing more is done. No more investigations. No more treatments. Whereas, sometimes, it will require an investigation that may not necessarily solve the health problem but will adjust the medication, and engage in comfort care with the new information we have, and take good care of the pain and the person." M2.

Review the relational approach in training programs

Participants (P, M, D) suggested revisiting the relational approach in training programs offered at universities, colleges, and professional programs, as it appears to be missing from the current courses. The relational approach aims to ensure that professionals establish a positive relationship with the patient throughout the care activity. One care partner felt that nurses and orderlies didn’t always have the right approach when working with older adults.

"If you are an orderly, if you are an auxiliary worker, if you are a nurse, there must be a somewhat different approach. It's true that in an operating room, if the staff is not trained, people die. Well, we cannot abandon the elderly just because they are elderly." P6.

However, some positive changes are taking place. For instance, one decision-maker mentioned that nursing assistant and orderly programs are currently being revised, with a greater emphasis on the relational approach.

"Be aware that the person-centered approach, the relational aspect, is truly identified as a skill to be strengthened in the basic training program. So, we are closely working with the ministry at the grassroots level in terms of skill development." D3.

Revise and optimize medications

Finally, the last organizational-level recommendation on the according to participants (P, M, D) was to revise and optimize medications when persons with dementia consult professionals or are hospitalized. For instance, one health project manager pointed out the need for a regular analysis of the medication of persons living with dementia.

"It seems to me that there needs to be a comprehensive look at the entire field of pharmacology. Having an analysis that says, 'Okay, what kind of cocktail do we have? You know, clean up in there, but it may not necessarily lead to deprescribing." M2.

Person with dementia and care partner -level recommendations

Stakeholders created three major recommendations for the person with dementia and care partner-level. The recommendations pertained to establishing collaborative relationship with persons living with dementia and their care partners, providing individualized services and care, and enhancing support for care partners.

Strengthen partnerships with persons living with dementia and care partners

Participants (P, C, D) recommended involving the persons living with dementia and the care partners in all care decisions and informing them of the risks and consequences of treatments or interventions. Persons living with dementia and care partners are not adequately considered in the healthcare and social system, and they need to be fully heard. One decision-maker underscored the significance of diagnosis in order to be able to intervene and preserve the quality of life of the person living with dementia. Additionally, she emphasized the necessity of altering perceptions when a person is diagnosed with dementia, and stressed the value of including persons living with dementia in their own care.

"In Alzheimer's disease, we need to consider not only the family caregiver but also the affected person. What I perceive is that we erase the affected person. They become the burden of the family caregiver. It would be good to put them back in their place because they also need support and intervention." D1.

Guarantee personalized services and care

Care partners (P) expressed concerns about the inadequate care that persons living with dementia received and suggested adapting care and services to their needs. Care needed to be personalized and humanized, respecting the preferences and choices of persons living with dementia and their care partners. One care partner recounted the experience of her 96-year-old mother-in-law, who was confined to a hospital for a month while wearing inappropriate clothes such as tightly laced shoes and a small hospital gown.

"During the pandemic, they were treated as cases. They were COVID cases, not treated as individuals with cognitive issues. They were numbed. Comfort was not provided, and their specific needs were not addressed. We treated the disease but did not respond to the person's needs." P2.

Reinforce support for care partners

Care partners recommended that they should be better informed of the rights and services available to them. There was a need for a clear and accessible step-by-step guidance and communication procedures. More support was expected.

"In short, all of this to say that in terms of rights, they have work to do on all rights, I would say, including the right to file a complaint, which is a right." P1.

Discussion

The three deliberative dialogue workshops gathered recommendations from care partners and persons involved in implementing the Quebec Alzheimer Plan to improve the care of persons with dementia and care partners. Fourteen recommendations were formulated, covering structural, organizational, provider and person with dementia and care partner levels. At the structural level, participants made recommendations about ageism and health inequalities. At the organizational level, they provided recommendations about interdisciplinary collaboration, primary care, and emergency services. Two additional recommendations were made concerning the healthcare crisis (pandemic), focusing on improved communication and flexible rules. At the provider level, recommendations were made regarding training, levels of care, and medications. Finally, at the person with dementia and care partner level, they recommended adapting services to the needs of persons living with dementia and care partners, and ensuring better involvement and access to information.

Some recommendations align with the international literature. The recommendation on ageism is linked with the priorities of the UN Decade of Healthy Ageing: Plan of Action 2021–2030. Indeed, the first action domain of this plan is to change the way we think, feel, and act about age and ageing [37]. The World Health Organization recognizes that ageism is detrimental to health and well-being. Various expressions of ageism towards older adults are present in healthcare, such as restricted access to treatment and surgical interventions, limited access to health services and resources, inadequate care, and inattention to family members [38]. Combating ageism must be integrated into all policies and programs, contributing to the delivery of better quality services [37].

Participants also highlighted the need to address health inequities across regions. The literature shows that persons with dementia who live in rural areas of Switzerland and Germany often lack services [5]. In Canada, rural areas face challenges because of limited personal or government resources to access healthcare facilities [5]. Support services are more appropriate in urban areas in countries such as Canada, Switzerland and Australia [5]. Persons living with dementia were also found to have less timely diagnoses of dementia, lower use of home care services, higher mortality, and higher prescriptions of antipsychotic medications in rural areas than in urban areas [39]. More equitable policies should be established and concretely evaluated to reduce health inequalities between regions.

In addition, participants in our study reported that emergency departments are not sufficiently adapted to persons living with dementia and that interdisciplinarity work needs improvement. Many countries still lack adequate emergency services for older adults, especially for people with multiple comorbidities including dementia [38, 40]. Despite the widespread dissemination of guidelines on geriatric emergencies, these remain highly heterogenous, and many emergency interventions do not comply with the guidelines [40]. Persons living with dementia experience particular challenges in emergency departments [41]. Behavioral and psychological symptoms of dementia are significant problems for persons living with dementia in emergency departments [41]. Additionally, care partners believe that persons living with dementia are often not cared for effectively because they have communication difficulties [41].

Participants also mentioned the need for more dementia training for health and social care professionals. Dementia education and training are among the priorities of the World Health Organization in the Global action plan on the public health response to dementia 2017–2025 [1]. The rapid increase in the number of dementia cases means that a highly qualified workforce is needed to manage this disease.

Participants also recommended offering more support to care partners and involving them in decisions related to the care of persons living with dementia. Bergmann et al. [5] pointed out the need to involve persons living with dementia and care partners in all decision-making processes. Regular communication facilitates good cooperation between care partners and health professionals and promotes better use of support services [5].

Our team collaborates closely with the Quebec Ministry of Health and high-level health system managers, as well as with community organizations such the Alzheimer Society. The recommendations will be used in the development of the first provincial Alzheimer’s policy, facilitating the determination of the most appropriate policy orientation and targets as well as provincial clinical guidelines. Through our connections with the Canadian Alzheimer’s Society and the Canadian Consensus Conference on the diagnosis and treatment of dementia, these recommendations will have implications on policy, programs, and clinical practices.

Strengths and limitations

This study has the strength of involving several stakeholders with different perspectives and backgrounds, which generated a greater diversity of opinions and expertise, as well as rich discussions. To our knowledge, there are not many publications developing recommendations through deliberative dialogues with multiple stakeholders to improve the care for persons living with dementia and care partners. Another strength is that the recommendations are based on rich local data, derived from the qualitative and quantitative results of a mixed-method study. Deliberative dialogues were conducted solely in the province in Quebec, which is both a strength and a limitation of this study. Recommendations must be province-based as health care in Canada is province-based [22]. Although these recommendations may not fully apply in other provinces due to variations in healthcare policies and practices, they would be informative.

Though we tried to engage with persons with varying experiences to develop recommendations, we only recruited care partners in the group of persons with lived experience. This is a limitation because care partners and persons with dementia may not experience healthcare in the same way [42]. However, we have considered the perspective of persons with dementia in our quantitative and qualitative results. Similarly, all participants were Caucasian and French speaking. Individuals from other ethnic origins were not represented, and their perspective might have led to different recommendations. In addition, the sample consisted predominantly of women, resulting in a limited representation of the men’s perspective and findings may not be transferable to the men’s population as a whole. Future studies need to put more efforts into recruiting a diverse group of persons with lived experience.

Conclusion

This study produced recommendations relevant for multiple stakeholders based on research findings, the lived experience of care partners, and the expertise of clinicians, health project managers, and decision-makers. While these recommendations revealed areas for improvement in the Quebec healthcare system to meet the needs of persons living with dementia and their care partners, it also highlighted certain areas that have already improved or are in the process of improvement. The recommendations were at various levels, from the structural to the person with dementia and care partner level, which can inform several bodies such as government, health and social care organizations, care providers, and society as a whole. All types of stakeholders unanimously recommended combatting ageism and improving dementia training. Implementing these recommendations can help reduce or eliminate the difficulties faced by persons living with dementia and their care partners in the health and social care system. Any healthcare system recovering from the pandemic may consider adapting and implementing these recommendations, and further studies should focus on identifying barriers to their adoption in a given context.

Authors’ contributions

IV, YC, HB, LRR, DCS, GAL contributed to the design of the study. IV, ALC, DCS collected and analyzed the data, and all authors contributed to the interpretation of the results. ALC drafted the first version of the manuscript. All authors critically revised and approved the submitted manuscript.

Funding

The Canadian Institutes of Health Research (CIHR)(VR5-172692) gave financial support for this study. We also received financial support from the Canadian Consortium on Neurodegeneration in Aging (CCNA). The Consortium is funded by a grant from the CIHR and from several other partners. The funding partners had no involvement in the study design; in the collection, analysis, and interpretation of data; in the writing of the report; nor in the decision to submit the article for publication.

Availability of data and materials

Data used and analyzed during the study are available from the corresponding author upon reasonable request and with permission from the Research Ethics Board.

Declarations

Ethics approval and consent to participate

We received ethical approval from the ethics committee of the Faculty of Medicine and Health Sciences of McGill University (IRB Study Number A07-E46-20B / 20–07-003). All participants gave written informed consent before participating. Research procedures respected the Declaration of Helsinki.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.