Abstract
Background
Persons living with dementia (PLWDs) and their care partners (CPs) often face decisions about future supportive care transitions.
Methods
We conducted in-depth interviews with a purposive sample of healthcare professionals (HCPs) experienced in supporting PLWDs and CPs with transitions in care. Interviews were audio recorded, transcribed, and coded using a hybrid deductive-inductive approach. We used thematic analysis to identify key themes regarding factors influencing supportive care decisions and planning and decision-making facilitators used by HCPs.
Results
Qualitative analysis of 18 interviews revealed four themes: (1) difficulty thinking about the future; (2) increasing CP burden with disease progression; (3) uncertainty about costs and resources; and (4) the impact of cultural values. HCP strategies to support decision-making included building trust; timely education; and facilitating access to resources. HCP input suggested the importance of an accessible decision tool, sensitive to sociocultural values, and administered by trusted experts.
Conclusion
We identified themes to inform development of a decision tool to support PLWDs and CPs supportive care transitions. HCPs highlighted the importance of early access to decision-making tools to facilitate dementia care planning and education.
Keywords: health care professionals, dementia, care planning, decision-making, qualitative research
What This Paper Adds (what the Paper Adds to Existing Literature)
• Views and experiences of health care professionals on decision-making processes involved in dementia care planning.
• Description of the HCP role in facilitating supportive care planning with PLWDs and CPs.
• Explores and describes the value of decision tools for supportive care decisions in dementia.
Application of Study Findings (the Applications of Study Findings to Gerontological Practice, Policy And/or Research)
• Provides strategies to facilitate supportive care decision-making with PLWDs and CPs.
• Provides perspectives of HCPs on value and timing of decision-making tools for PLWDs and CPs regarding supportive care.
Introduction
The prevalence of Alzheimer’s Disease and Related Dementias (ADRD) is expected to increase to 153 million persons globally by 2050 (Nichols et al., 2022). The progressive nature of ADRD is dynamic, bringing changes in cognition and behavior, and eventual challenges in communication and activities of daily living (“2025 Alzheimer’s Disease Facts and Figures,” 2025). These changes necessitate shifting household roles, increasing caregiving responsibilities, and multiple decisions related to informal and formal supportive care (e.g., increased care at home, or a move to a facility) (Lee et al., 2022; Taylor et al., 2023).
Planning for supportive care ideally aligns with the principle of person-centered care, which emphasizes maintaining personhood and choice, thus actively including the perspective of the person living with dementia (PLWD) (Bhattacharyya et al., 2022; Fazio et al., 2018; Kogan et al., 2016). Shared decision-making (SDM) is a widely recognized approach to promoting person-centered care (Goossens et al., 2020; Mariani et al., 2017) By explicitly incorporating the values, preferences, and goals of PLWDs into shared decision-making alongside care partners (CPs) and healthcare professionals (HCPs), SDM can align care and treatment with individual needs, leading to improved outcomes (Elwyn et al., 2012; Mariani et al., 2017).
However, the realities of the progression of dementia in the context of relational and family dynamics often lead to tensions that complicate shared decision-making. Perceived or actual declines in cognitive capacity can lead to CPs making decisions based on what they believe is in the PLWD’s best interest (Donnelly, 2019; Miller et al., 2016). Moreover, even if preferences are known, CPs may struggle to balance those preferences with uncertainties, family pressures, sociocultural values, and caregiver burden (D’Cunha et al., 2023; Fetherstonhaugh et al., 2017; Gallagher-Thompson et al., 2020; Smith et al., 2022). Tensions related to decision incongruences can become especially pronounced at key transition points such as the decision to seek supportive care, leading to deferral of decisions until crises arise, thus reducing opportunities for proactive planning (Gitlin & Wolff, 2011; Sun et al., 2014). HCP involvement in SDM can also be challenging, influenced by the PLWD’s ability to process complex information as well as patient or family level of readiness to make decisions (Fisher et al., 2018; Politi et al., 2013).
Although there is increasing literature on SDM in the context of decision-making, older adults, and dementia (Egan et al., 2023; Mattos et al., 2023), most studies focus on SDM within dyads, such as PLWD-CP, or CP-HCP. There is little known about SDM within care networks, or triads of the PLWD, CP, and HCP in the context of these tensions (Garvelink et al., 2018; Tuijt et al., 2025). In particular, to our knowledge, no studies have explored the role and experience of HCPs in SDM in the context of decision-making of PLWDs and CPs regarding transitions in care, the challenges they observe and face, and the strategies they implement.
The goal of the the Decision Making in Alzheimer's Research (DMAR) study (Turner et al, 2025) is to better understand factors that influence decisions regarding future supportive care from the perspectives of PLWDs, CPs, and HCPs, and to develop a tool to help elicit preferences from PLWDs. Findings from interviews with PLWDs and CPs have been previously published (Taylor et al., 2023). The study described here focuses on interviews with HCPs to: (1) understand the challenges HCPs encounter related to supportive care decisions, (2) identify the strategies HCPs utilize to engage PLWDs and CPs in planning and decision-making, and (3) inform the design of a preference elicitation tool for PLWDs and CPs.
Methods
Recruitment
A purposive sample of HCPs (clinicians, social workers, and health care administrators) with experience related to supportive care decisions of PLWDs and CPs in Washington State were recruited for participation in semi-structured interviews (Patton, 2014). Participants were identified through the Alzheimer’s Disease Research Center (ADRC) and community partners throughout King County, Washington, including assisted living facilities, memory care facilities, senior centers, and the Washington state Alzheimer’s Association and recruited via phone and email. Inclusion criteria included: 18 years of age or older, English proficiency, and experience working with older adults with dementia in the context of supportive care transitions. Research staff collected informed consent from all participants.
Interviews
The interview guide was developed by a panel of experts in geriatrics, neurology, palliative care, decision-making, and consumer informatics, and pilot tested with a social worker with extensive experience with dementia. Semi-structured interviews took place over Zoom or by telephone between September 2020 and March 2021 and were conducted by three female (master’s and PhD level) research staff (JT, MA, MD) from diverse disciplines (industrial engineering, health systems, public health, medicine) with experience in qualitative research. Only research staff members and participants were present during the interviews. Interviewers introduced themselves at the beginning of each session and described their role in the research project. Interviews focused on HCP experiences with supportive care decisions, and their role in these decisions. Additionally, to inform the development of a decision tool for the project, HCPs were asked when, where, and how they saw a decision tool being useful. (See supplementary materials for complete interview guide). Interviews lasted approximately 45-60 minutes, and were recorded and transcribed using Rev (Rev.com, n.d). Interviewer notes were taken for reference during analysis. All recordings and transcriptions were stored in password protected files. All transcripts were de-identified. Participants received a $25 gift card upon completion.
Data Analysis
The study utilized deductive-inductive coding approaches and thematic analysis (Braun & Clarke, 2006). The initial codebook was developed for interviews with PLWD, CP, and HCP, and drew from research focused on decision-making in the context of PLWDs' care transitions and moving from their homes (Engelsma et al., 2020; Garvelink et al., 2018; Orsulic-Jeras et al., 2020; Roy et al., 2018) and reading through interview transcripts. The categories of this codebook were decision timing, decision-making domains, health dimension, values and beliefs, social dimensions, socioeconomic, physical and external environments, and values of future supportive care. The overall focus was on coding factors that HCPs noted as influencing the decision-making processes for supportive care decisions in the context of dementia.
The research team met weekly from January through March 2021 to refine the codebook, discussing interviews, reviewing coding categories, clarifying code definitions as needed, and adding new codes that emerged from the interviews. Interview notes were referred to as needed in this process. Interviews continued until no new areas of coding emerged, and the research team agreed that data saturation had been reached. An investigator triangulation method was utilized to minimize bias and increase validity of our thematic analysis (Bennett et al., 2020; Patton, 2014). Two team members (JT, MA) then applied the final codebook to all 18 transcripts, double coding 9 transcripts (50%), then single coding the remaining transcripts while continuing to review each other’s codes for agreement, and meeting regularly to reach consensus.
To explore additional research questions, a secondary round of coding focused on sociocultural factors influencing supportive care planning. This was conducted across three structured phases from April to August 2024. In April-June 2024, coders (JT, MAM) applied an inductive, constant comparative approach to identify additional concepts related to sociocultural factors (Glaser, 1965). Four transcripts (22% of the sample) were then double-coded; interrater reliability for this phase reached κ = 0.86, indicating high agreement. In July-August 2024, the coders independently and asynchronously double-coded 5 transcripts (28% of the sample) under blinded conditions to further establish reliability, after which the remaining 9 transcripts were single-coded. All discrepancies were resolved in consensus meetings and code definitions were clarified as needed. The qualitative software program Dedoose (version 8.0) was used to manage all coding.
Thematic analysis of the data followed an iterative process of organizing codes and generating and reviewing themes as a team. The themes were further fleshed out through iterations in a collaborative process, where co-authors and team members dialogued and checked for bias and hidden assumptions.
Results
We contacted 22 HCPs, of whom 18 enrolled in the study: 3 clinicians (neuropsychologist, internal medicine, and geriatrician), 13 social workers, 2 program administrators, and a manager of a retirement facility. Four HCPs did not respond to our outreach. Participants ranged in age from 32 to 73 years; most identified as female and white (Table 1).
Table 1.
Participant Descriptive Statistics
| Description | HCP n (%) |
|---|---|
| N | 18 (100) |
| Gender | |
| Male | 3 (17) |
| Female | 15 (83) |
| Age | |
| 30-39 | 4 (22) |
| 40-49 | 4 (22) |
| 50-59 | 5 (28) |
| 60-69 | 3 (17) |
| 70-79 | 2 (11) |
| Ethnicity | |
| Hispanic | 4 (22) |
| Not Hispanic | 13 (72) |
| Unknown | 1 (6) |
| Race | |
| Asian | 2 (11) |
| Black/African American | 2 (11) |
| Mixed Race/Other | 4 (22) |
| White | 10 (56) |
| Education | |
| Associate’s degree | 1 (6) |
| Bachelor’s degree | 3 (16) |
| Graduate degree | 14 (78) |
Types of decisions, key challenges, and strategies to facilitate supportive care decision-making are discussed below, as well as perspectives of HCPs concerning tools to help elicit preferences and support decision-making.
Factors Influencing Supportive Care Decision-Making
Difficulty Thinking About the Future
A common challenge to supportive care decision-making described by HCPs was the tendency for PLWDs and CPs to focus on the present, rather than the future. HCPs described frequently encountering PLWDs and CPs who seemed to be in denial about the diagnosis: “I just don’t think most of them are really able to go there…. usually there’s a certain amount of defensiveness to the diagnosis that’s very common, and to their limitations because of it.” (HCP_109, geriatric social worker).
This concern regarding the early impact of dementia on thinking about and planning for the future was echoed by this participant:
“I started wondering if … one of the very first things that somebody loses in the cognitive impairment journey is the loss of the ability to imagine a future state of themselves, and that they may be perfectly able to understand the pros and cons of a decision before them right then and there, but that their ability to imagine the future state of themselves and to say what they would want for that future state of themselves, is a much more complex cognitive process than we realized.” (HCP_106, clinician)
Other HCPs perceived that this focus on the present in early dementia reflected a fear of the unknown and the stigma of dementia. In cases where dementia had progressed further, HCPs stated that PLWDs “don’t realize how much help they need” (HCP_109, geriatric social worker), “are not aware that their brain has changed” (HCP_110, social worker), or “have reduced insights about their limitations” (HCP_111, clinical social worker).
Increasing CP Burden With Disease Progression
The progression of ADRD and related burden on CPs was a predominant concern for HCPs, and they attributed the delay of supportive care decisions in part to the challenges of emotionally adjusting to the disease progression. HCPs also described CPs having trouble embracing caregiving help in the context of their loved one’s dementia, not wanting to “relinquish… some of the care and love they’ve been giving to a complete stranger” (HCP_103, care consultant).
At the same time, ADRD-related behaviors such as wandering and sleep disruption required increased vigilance and increased CP burden.
“Because the person with dementia doesn’t sleep through the night, the caregiver doesn’t sleep through the night. You cannot do dementia caregiving if you don’t get a decent night’s sleep, that is probably one of the biggies.” (HCP_109, geriatric social worker)
Other behaviors such as dementia-related anger and combative behavior could progress to a point where safety was an issue for the CPs.
“The disease … triggered this symptom of anger that comes out in frustration and quite violent behaviors. … [T]he spouse … found herself locking herself in the bathroom at some point because she didn't feel safe.” (HCP_103, care consultant)
Although increased CP burden and safety risks can lead to transitions in care, HCPs found that disagreements about PLWD’s decision capacity and desire for autonomy versus need for safety often created inter-familial conflict and delayed decision-making.
Many HCPs saw these delays resulting in chaotic decision-making, often in the setting of a crisis. One HCP described a family member saying “I’m in over my head, I can’t take care of this person. I need to transfer them now.” (HCP_108, clinician). Another HCP noted “I think a lot of families deal with it by not thinking about it. So … I can give them all of the resources, and prompt them all I want… then I usually end up supporting them more in crisis.” (HCP_103, care consultant).
Uncertainty About Costs and Resources
HCPs described varying dynamics around planning for paid dementia care. Uncertainty about both the costs of care and Medicaid/Medicare reimbursement posed a challenge to realistic care planning. One HCP stated that, “many people don’t realize just how expensive long-term care is, whether or not it’s in the home or in a facility.” (HCP_111, social worker) Another HCP described affordability concerns of PLWDs and CPs as limiting exploration of options:
“It's just the financial piece is a huge factor that makes people think, ‘Oh, you think I can spend $10,000 a month? That's not going to be for me.’” (HCP_103, care consultant)
Concerns about the costs of supportive care were often intertwined with family expectations, dynamics and cultural values. HCPs described situations in which PLWDs did not communicate with their adult children about the cost of care, saying “it’s easier for people to talk about things like dignity and psychological burden than… financial burden.” (HCP_106, clinician) Reasons included not wanting to burden their children and a desire for privacy. One HCP described this scenario:
“They may tell their caregiver ‘where I want to be buried, and I got this amount of money in the bank for my coffin’ and all that. But in terms of how much other money they have, they don't want to share that.” (HCP_117, social worker)
Several HCPs noted that in some cases multiple generations of family members lived together rather than choosing formal care, with family members working outside the home to pay for expenses, and other family members providing informal care for the PLWD during the day. In some cases, family members applied for Medicaid reimbursement in order to stay at home and provide informal care, but faced challenges in qualifying due to the strict requirements:
“… potentially their loved one qualifies for Medicaid, but maybe the person’s doing pretty well with their activities of daily living, so they only qualify for five hours a week for caregiving. … everyone is in agreement that ‘we want our loved one to be at home’, but there’s not care for it.” (HCP_111, clinical social worker)
Those with fewer resources often faced additional challenges in finding affordable supportive care options, such as dealing with long waiting lists or waiting periods (particularly for Medicaid patients), or low-quality facilities.
Impact of Cultural Values
HCPs often described socio-cultural values playing a role in supportive care decisions. Filial responsibility was frequently described by HCPs as influencing supportive care planning, particularly for minoritized populations. Multiple health care professionals mentioned the cultural expectation that children or family members would take care of their aging parents at home and consider formal care only as a last resort.
“It's really hard for caregivers to say, ‘I give up, I need to move them on to a facility.’ It's that commitment that is the hardest thing to break for families.” (HCP_118, Clinical Social Worker)
HCPs also described a fear of community judgment that placing a loved one in a care facility could be perceived as neglect or a failure to show adequate love. This fear of judgment often led to a reluctance to place loved ones in care facilities, even when the family found it difficult to meet the elder’s needs. Additional concerns about the quality and reliability of formal care providers, the lack of cultural concordance, as well as a lack of familiarity with formal care facilities, also contributed to CP reservations about moving the PLWD to a facility. One participant shared that families frequently inquired, “Will they care for my loved one the same way I do?” -- a reflection of the deep concerns around continuity of care and understanding of elders’ needs and preferences (HCP_116, administrator).
Structural racism and historical mistreatment within the United States were described as undermining trust in medical institutions, and influencing how minoritized PLWDs and CPs engage in dementia care planning and supportive care discussions. One provider reflected on conversations with African American PLWDs and CPs:
“… because of centuries of horrible treatment, there is really a strong distrust of the medical system. And that complicates conversations about goals of care a lot.” (HCP_106, clinician)
HCPs noted that such issues of mistrust and inequities in care could constrain opportunities for early engagement in supportive care discussions resulting in more reactive than proactive decision-making as discussions often happened at crisis points.
Additionally, HCPs described the deeply held value of homeownership within the elder community, representing not just personal achievement but also resistance to historical injustices. Many PLWDs expressed a strong desire to stay in their homes for as long as possible. Such values could complicate the family’s financing of long-term care for the PLWD, as sale of the home is often necessary to cover care facility costs.
Finally, many HCPs described how differing interpretations of cognitive decline within families could complicate care planning, particularly when dementia was considered a normal part of aging. The lack of appreciation of dementia as a disease was often rooted in cultural perceptions, leading to conflict when some family members sought medical care and others resisted diagnostic or supportive services.
Strategies to Facilitate Supportive Care Planning
The majority of HCPs described implementing multiple strategies to facilitate dementia care planning and help PLWDs and CPs to avoid reactive, crisis-based decision-making. They often utilized tailored, person-centered methods and trust-building strategies (e.g., active listening, early education, and anticipatory guidance) while also providing relevant access to resources. One HCP stated: “…based on what I’m seeing in the room, I will cater to that.” (HCP_108, clinician) Table 2 connects these strategies with the factors influencing supportive care decision-making.
Table 2.
HCP Strategies to Facilitate Supportive Care Planning
| Factors | HCP interventions |
|---|---|
| The Progression of ADRD | |
| • Changes in memory and judgment | • Assess: |
| • Changes in communication | • PLWD cognition and ability to communicate |
| • Change in behavior | • CP burden |
| • Attend to emotions and needs | |
| • Facilitate access to peer support groups | |
| Difficulty Thinking About the Future | |
| • Start conversations about planning for increasing care needs: | |
| • Family denial, anxiety, and conflict | • Introduce topics, facilitate family meetings |
| • Provide early and ongoing education regarding: | |
| • aging and dementia | |
| • future possibilities; destigmatize need for help | |
| • power of attorney, wills, guardianship, etc. | |
| Financial Resources | |
| • Socioeconomic Realities | • Provide education about care costs and financial resources |
| • Limited Informal Care | |
| Cultural Values | |
| • Beliefs about aging | • Build trusting relationships: |
| • Sense of duty | • Listen and connect |
| • Lack of trust | • Respect/honor feelings |
| • Work within cultural community | |
| • Provide culturally-sensitive education about: | |
| • ways to honor commitments and accept help | |
| • appropriate resources | |
Building Trust Through Listening and Inclusion
HCPs emphasized the importance of building trusting and personalized relationships with PLWDs. This included ongoing assessment of the PLWD’s cognition and ability to engage, and simplifying concepts as necessary.
One aspect of promoting trusting relationships was the inclusion of all invested family members and friends in conversations. Many HCPs recommended a family planning meeting in which “everyone is at the same table” (HCP_105, care consultant) to ensure that all voices are heard, starting with the voice of the PLWD. Some HCPs noted that these meetings could be distressing, particularly when the PLWD did not recognize the need for more supportive care or had difficulty communicating. They described playing an active role in setting the rules for engagement and fostering a safe environment in the context of disagreements about level of care between family members, the CP, and the PLWD and working toward understanding. Some HCPs also described the value of facilitating separate groups to encourage more open sharing, and giving the PLWD a choice of whether to meet as a group or on their own without the CP or family members.
Another important aspect of listening described by HCPs was paying attention to sociocultural factors. Many HCPs stated that families’ concerns about trust and care quality standards began with whether formal care services and providers would understand or respect their cultural practices and personal (e.g., faith) preferences. Examples of responding to these concerns included engaging and fostering trust with Latino seniors through tailored community-based programs and providing culturally appropriate care to Native American communities through hiring and training of community-based CPs:
“They needed a lot of support and a lot of trainings, because even to understand what dementia is, it takes training, and they have to learn what it is and how to deal with it. And so, it was a couple years of working. I worked very closely with the person who was part of the tribe that had partnered with me on this.” (HCP_114, care consultant)
One HCP noted the need for increasing the diversity of the HCP workforce to meet the need for trusting conversations.
Timely Education
HCPs emphasized the need for early and ongoing provision of tailored information to facilitate elicitation of preferences related to future planning. Most focused on providing information about the disease at the time of diagnosis, or soon after.
“I think it takes a lot of education for folks that don't really know anything about the disease to really get a handle on what each phase in stage could look like and that everyone progresses in a different timeframe and a different capacity.” (HCP_102, care consultant)
HCPs described providing information, support and resources to facilitate decision-making, with a particular focus on educating PLWDs and CPs about dementia, expectations regarding disease progression, and the distinction between dementia and normal aging-related changes. Education was considered particularly important in the context of cultural viewpoints on aging and memory loss:
“… the idea of senility and dementia and the intersection there needs to be a little bit more education in terms of for our communities. No, it's not a normal part of growing old.” (HCP_116, administrator)
Another focus was on planning related to practical issues over the course of dementia progression, including ensuring safety at home, discussing retirement from driving, making financial and healthcare decisions (e.g., power of attorney, estate planning), and accessing information about different types of formal care and facilities. One HCP noted:
“A lot of people don't know what's the difference between assisted living and a nursing home. I mean, really basic stuff they don't know. So, there's a lot of education that happens with families.” (HCP_105, care consultant)
An intervention that HCPs identified as particularly helpful in facilitating planning for future supportive care was coaching PLWDs, CPs and family members in various ways to think about the future or contemplate potential scenarios. HCPs detailed standard questions for prompting PLWDs in thinking about their preferences for the future including: “What if something happens to [your caregiver]? Who would help you?” (HCP_104, care consultant) At the same time, HCPs emphasized the need to frame the conversation carefully so the topic would be openly received and prompt thoughtful responses. One HCP suggested using language like “Let’s plan this for now, let’s see how this goes” when talking about possible options. (HCP_105, care consultant).
HCPs also noted that despite their efforts, PLWDs and CPs were often only able to process immediate information:
“It's just hard because people think that everything's going to remain the same, and then every time something changes they adjust but they don't think five or six months down the road.” (HCP_118, clinical social worker)
Another HCP stated “we just have to let do the best we can in educating, and then you wait for an emergency basically…”. (HCP_110, social worker).
Facilitating Access to Resources
HCPs described multiple ways in which they helped PLWDs and CPs access resources to facilitate supportive care decisions including legal help (e.g., setting up wills), support groups, and interpreters. Because language could be a barrier to communication with health care providers, some HCPs described encouraging families to request interpretation services. HCPs also noted that conversations could be more effective when led by individuals from similar cultural backgrounds. Others noted that support groups and hearing from peers were the best way to normalize the diagnosis and decisions about transitions or supportive care. HCPs talked about finding groups for clients:
“So, the denial piece is really hard. That's definitely when support groups for people, or who have been diagnosed come into this…, that's a huge support piece that really, really helps people see others that have gone through it.” (HP_103, care consultant)
For those considering transitions to some form of formal care, several HCPs suggested arranging site visits, to allay concerns and provide reassurance. For families worrying that formal caregivers might not provide the same level of personalized and compassionate care that they would offer themselves, HCPs worked to help families learn about options that might alleviate their concerns, such as the availability of culturally familiar foods in facilities.
A Tool to Elicit Preferences
HCPs were very interested in a potential tool that would help to elicit preferences and emphasized the importance of human interaction in conjunction with the tool. They noted that such a tool would be best administered in a community setting, with a specified person for follow up, whether a primary care provider or a care consultant. Several HCPs mentioned the advantage of introducing a tool in a clinical environment due to the perceived “clout” that physicians have with patients, although some doubted whether clinicians would have time to incorporate such a tool into busy office visits:
“for many of my seniors if a doctor says it, it’s set in stone. But if a doctor doesn’t have the time to go through a tool … then it’s not realistic to have it there.” (HCP_118, clinical social worker)
One HCP also described the importance of embedding the tool in the context of providing information about dementia and available resources.
When asked what the ideal timing would be for such a tool, HCP responses underscored tensions between a desire to provide an intervention as soon as possible and the reality that many PLWDs and CPs would not be willing or able to engage in future care planning in the early disease stage. Most HCPs promoted early implementation of a tool, with one HCP suggesting that these conversations and tools would be most effective “before they have any cognitive issues, because that’s when they’re making sound decisions.” (HCP_110, social worker). Several HCPs suggested that introducing a decision-making support tool at the time of diagnosis or as soon as possible could provide an opportunity to discuss expectations for the future with both PLWDs and family members, “while people are still able to voice their preferences.” (HCP_101, social worker) HCPs also saw a tool being part of an ongoing conversation over time, with one suggesting introducing the tool at diagnosis and again at six- and 18-months after diagnosis, “because sometimes people don’t’ understand what they need until they see something like that… or it’s taking them 6 months to come to the realization like, this is actually diagnosis and here’s what we’re actually going to be dealing with.” (HCP_102, care consultant).
Discussion
We sought to identify factors influencing supportive care decision-making of PLWDs and CPs from the perspectives of HCPs, and key considerations to inform the design of a preference elicitation tool that supports person centered decision-making. HCP input provided insights into various aspects of planning and decision-making related to increasing need for assistance due to worsening cognitive impairment. We identified several themes related to supportive care transitions that require consideration when developing an intervention to facilitate SDM: difficulty thinking about the future, increasing CP burden with disease progression, uncertainty about costs and resources, and the impact of cultural values.
HCPs described various roles in facilitating supportive care planning, and strategies for initiating discussions about care planning that emphasized building trust, providing timely education, and facilitating access to resources. Such efforts require intentional commitment and effort by health care organizations to support education and training in SDM, and to provide HCPs resources to effectively facilitate SDM with the PLWD-CP care dyad (Egan et al., 2023; Mattos et al., 2023).
In addition, HCPs provided valuable perspectives on the value and timing of decision-making tools for PLWDs and CPs regarding supportive care to facilitate successful implementation of SDM interventions. Although difficulty thinking about the future was frequently mentioned as a barrier to supportive care decision-making, many HCPs advocated for a decision tool that would be implemented as early as possible to avoid last minute decision-making. Other studies have also described a preference of PLWDs and CPs to focus on the present (Hellström & Torres, 2016), and difficulties of early-stage CPs in accepting and processing the diagnosis of dementia (Boots et al., 2015). However, when asked retrospectively, PLWDs and CPs have confirmed the importance of early education and care planning (Boots et al., 2015; Samsi et al., 2022).
Tailoring support at the appropriate time is a challenge given different levels of readiness for PLWDs and CPs, the impact of ADRD progression and related CP burden, and limited HCP time. A potential solution is a planning tool that would be introduced to PLWDs and CPs at multiple points in time (Lord et al., 2016). HCPs affirmed the potential usefulness of such a tool introduced early in diagnosis and re-administered throughout the dementia trajectory.
Sociocultural values, particularly filial duty, trust, and beliefs about aging were also described by HCPs as important factors to consider in the context of supportive care planning. Distrust of medical professionals, and difficulty with communication in non-native languages are also important to consider. Tailoring support to specific individuals, family, languages and cultural contexts is crucial, remembering that one size does not fit all (Gallagher-Thompson et al., 2020; Whitlatch & Orsulic-Jeras, 2018). In the context of a decision tool, this could mean expanding access beyond a dyad to other family members or stakeholders, as well as developing protocols for communication and building rapport, utilizing “experts” who are trusted by the population they serve.
Input from HCPs underscore the need for integration of effective decision support tools within SDM that are flexible over time, responsive to disease progression and grounded in ongoing education and trusted relationships. These insights helped inform our subsequent development of a preference-based decision support approach, using a discrete choice experiment (DCE) survey, for PLWDs and CPs (Regier et al., 2025).
Limitations
We used purposive sampling to ensure we interviewed key informants that worked closely with PLWDs and CPs. The HCP participants had varying roles within the relational and social structure surrounding the PLWD. Some (clinicians) were primarily focused on the PLWD, while others (social workers and care consultants) focused more on the family, often through direct contact with one CP. However, the limited sample size of different HCP types prevented us from analyzing responses based on HCP role. In addition, all participating HCPs were drawn from the Seattle-King County region in Washington State, therefore our findings may not be generalizable to different geographic regions. While in-depth qualitative interviews provide rich data and context, conducting and analyzing qualitative interviews can be subject to researcher bias. In order to address this possibility, the interview guide was developed by a diverse group of researchers and community experts. Additionally, to minimize potential bias we triangulated our coding and thematic analysis by using two experienced qualitative researchers and performed member checking through providers on our community advisory board to support qualitative rigor.
Conclusion
The progressive nature of dementia and the diversity of familial, sociocultural, and financial contexts influence the readiness of PLWDs and CPs to plan for future supportive care. HCPs have a unique opportunity to effectively support and facilitate supportive care planning in the context of SDM, through utilizing methods of building trust, providing information, and facilitating access to resources. Decision tools such as our DCE survey, introduced by the care team soon after diagnosis and revisited over time, have the potential to provide needed support to the SDM process (Mattos et al., 2023).
Supplemental Material
Supplemental Material for Facilitating Supportive Care Decision-Making for Persons With Dementia: Qualitative Insights From Health Care Professionals by Jean O. Taylor, Rashmi K. Sharma, Maryam S. Abdel Magid, Kimiko Domoto-Reilly and Anne M. Turner in Sage Open Aging.
Acknowledgements
We acknowledge and thank our participants for the time they took for our interviews. We also thank our community partners for their input into our process. Finally, we thank Mary Grace Asirot and Mariana Duran for their assistance with interviews and coding.
Author Contributions: Conceptualization and Study design: AT, RS; Interviews and data collection: JT; Analysis and interpretation: JT, AT, RS, MAM; Initial draft: JT, AT, MAM; Critical review: AT, RS, KD.
Funding: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research reported in this publication was supported by the National Institute on Aging of the National Institutes of Health under Award Number R01AG066957. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: The authors declare no potential conflicts of interest with respect to the research authorship, and/or publication of this article.
Supplemental Material: Supplemental material for this article is available online.
ORCID iDs
Jean O. Taylor https://orcid.org/0000-0002-7397-7985
Rashmi K. Sharma https://orcid.org/0000-0002-2050-4500
Maryam S. Abdel Magid https://orcid.org/0009-0004-8565-7665
Kimiko Domoto-Reilly https://orcid.org/0000-0002-7396-1633
Anne M. Turner https://orcid.org/0000-0002-1915-016X
Ethical Considerations
The University of Washington Institutional Review Board (UW IRB) approved all study procedures and materials [STUDY0009803].
Consent to Participate
All participants provided verbal informed consent prior to enrollment in the study.
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Supplementary Materials
Supplemental Material for Facilitating Supportive Care Decision-Making for Persons With Dementia: Qualitative Insights From Health Care Professionals by Jean O. Taylor, Rashmi K. Sharma, Maryam S. Abdel Magid, Kimiko Domoto-Reilly and Anne M. Turner in Sage Open Aging.