Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype

Abstract

Clinical decision aids around long-term care can help support persons living with dementia (PLWD), family care partners, and healthcare providers navigate current and future care decisions. This study describes the iterative development of a long-term care planning dementia decision aid and explores care partner and geriatric providers’ insights regarding its acceptability and usability. Using a convergent parallel mixed methods design, we gathered surveys and completed interviews with 11 care partners and 11 providers. The quantitative and qualitative data were then converged, resulting in four findings: (1) helpfulness of the decision aid in supporting future care planning; (2) versatility of the decision aid in practice; (3) preferences for structure and content of the decision aid; and (4) perceived shortcomings of the decision aid in decision making. Future work should continue to refine the decision aid, pilot implementation, and evaluate potential effects on decision making as part of dementia care.

Keywords

dementia decision aid long-term care planning primary care caregivers

Introduction

The dementia illness process is met with multiple complex decisions between persons living with dementia (PLWD), families, and providers (Bhatt et al., 2020). Family and other individuals sharing a reciprocal relationship to provide care and emotional support to PLWD (“care partners” hereafter) are closely involved in dementia care decision making (Frank et al., 2020). Due to progressive neurocognitive symptoms of dementia impacting decision-making abilities, having these discussions earlier in the illness trajectory can ensure individual values and preferences guide clinical approaches and promote person-centered care (Dening et al., 2018). Therefore, healthcare has worked to refocus medical decision-making to be more person-centered, including through decision aids to support a PWLD and their care partners in conversations around future care (Davies et al., 2021).

Long-term dementia care discussions may be delayed due to several factors (Tilburgs et al., 2018). Primary care providers may delay long-term care planning discussions due to difficulties in determining the appropriate time to initiate these discussions or lack knowledge and training specific to dementia and future care needs (Tilburgs et al., 2018). PLWD and care partners may assume passive roles in the decision-making process or lack insight on potential decisions that can arise in advanced stages of the disease (Davies et al., 2021; Dening et al., 2018; Mejia et al., 2019). Additionally, as decision making capacity declines, care partners often serve as the proxy decision-maker which can be associated challenging emotions such as grief and guilt (Lord et al., 2015; Scherer et al., 2021). A decision aid can address these needs by providing a systematic approach to promote long-term care discussions and future planning earlier in the disease process.

The International Patient Decision Aid Standards (IPDAS) provide guiding principles to facilitate person-centered care, aid clear communication, and maximize the benefit of created tools for all patients (Elwyn et al., 2006). In dementia care, decision aids can increase knowledge, improve quality of communication with providers, and reduce decisional conflict and associated negative emotions for care partners (Davies et al, 2019). Further, decision aids are beneficial in supporting immediate decisions while proactively introducing options and decisions about long-term care needs across the illness (Lord et al., 2017).

Previous studies highlight the need for long-term care decision aids for PLWD and their care partners (A. Hoffman et al., 2013), yet few evidence-based decision aids are available to assist PLWD and care partners with long-term care planning (Davies et al., 2021). Examples of such decision aids include the printed Dementia Carers Making Informed Decisions (DECIDE) manual for facilitating discussions to inform decisions about future living arrangements (Lord et al, 2016) and websites providing education, identification of values, resources, and behavior planning for long-term services and supports (A. Hoffman et al., 2013). Primary care is a particularly important source of dementia care as cognitive impairment is often first detected in primary care clinics (Fortinsky, 2001). Furthermore, longitudinal relationships between patient, care partners, and primary care providers often provide continuity across the illness trajectory and guidance on decision-making related to managing comorbidities and long-term care needs (Iliffe et al., 2009). Therefore, applying best practices in developing decision aids for use in primary care can promote the provision of broad, early guidance to PLWD and care partners.

Building upon existing decision aids in dementia care (Lord et al., 2016), we iteratively developed a prototype decision aid to support long-term care planning for use in a geriatric primary care clinic. The primary objective of this mixed methods study is to identify care partner and provider perspectives on the potential usefulness of the decision aid in clinical care, including feedback for further refinement. This project adds to existing dementia decision-aid literature aimed at engaging stakeholders in long-term care planning through clarifying patient values and decision making in the context of living with dementia.

Methods

Study Overview

The decision aid was developed in stages using IPDAS guidelines including key end-user feedback to iteratively design for clinical use and following steps we have previously used (Scherer et al., 2021). Once multiple stages of stakeholder input were incorporated, we surveyed and conducted semi-structured interviews with care partners and providers to evaluate the decision aid. Using a convergent mixed methods design, we concurrently created the survey and semi-structured interview guide to allow for simultaneous quantitative and qualitative data collection (Creswell, 2014). Surveys quantitatively measured participant acceptability, usability, helpfulness in decision-making, and perspectives on bias of the content in the decision aid. Interviews assessed participant perspectives of the decision aid to learn how and why it might be acceptable or useful in navigating dementia care decisions. Quantitative and qualitative data was analyzed separately, and findings were then compared to learn how the identified qualitative themes confirmed or differed with survey results (Creswell, 2014). The results were then, converged to present participant feedback that includes quantitative data findings alongside exemplar quotes. The research was approved by the Institutional Review Board (#21-4336). Data is available by request.

Initial Development and Refinement of the Decision Aid

Our design team consists of a geriatrician, a decision aid expert, dementia care team navigators from an integrated CareEcosystem model (Possin et al., 2017), and research assistants. The team first began with the clinical question, “Should I move my loved one to a long-term care facility?” The initial categories (informed by the IPDAS framework) defined the question, named options, patient or care partner values, questions to consider, and next steps. Early ideas for the structure and content of the decision aid were presented to the Colorado Program for Patient Centered Decisions patient and family advisory board to refine categories, considerations, and primary question. The advisory board included 11 lay patient advisors (older adults with diverse experiences engaging with the healthcare system, including care partners). The advisory board provides feedback and guidance to research projects at any stage of development. Following their feedback, the primary question shifted to “Time for More Support?”. A first draft was created and iteratively revised by the design team, who then returned to the advisory board for additional feedback. We then initiated the mixed methods evaluation of the decision aid prototype, incorporated care partner and provider feedback, and met with the advisory board again to refine the final version to achieve an 8th grade reading level (Supplement I, also available at https://patientdecisionaid.org/). See Supplement II for a detailed description of decision aid changes over time.

Setting and Participants

Study participants consisted of family care partners of PLWD and healthcare providers affiliated with an academic geriatric practice in Colorado. Care partners were recruited from an adaptation of the CareEcosystem dementia caregiver support program (Possin et al., 2017) within the clinic. Providers were recruited from a geriatric outpatient practice in an academic medical center in Colorado, and included geriatricians, geriatric medicine fellows, advanced practice practitioners, clinical social workers, and behavioral health providers.

Procedures and Measures

Potential participants were invited to the study via email and those interested responded to the research team directly. The team shared the purpose of the study and completed verbal informed consent with participants. Participants received a paper or electronic copy of the decision aid to review. All participants completed surveys and a semi-structured interview. Care partners were offered $25 for their participation.

Quantitative Measures

Participants completed an electronic acceptability survey and demographics questionnaire. The acceptability survey was adapted from Barry et al.’s (1995), Decision Aid Acceptability survey and included six or seven-items (care partners had an additional question to clarify if the decision aid helped identify their values related to dementia care decisions). Supplement III includes the survey and response categories for each item. The survey focused on domains related to acceptability, usability, helpfulness in decision-making, and perspectives on bias of the content. Data were managed using REDCap electronic data capture tools (Harris et al., 2009). Surveys were de-identified from participant data.

Qualitative Data Collection

Interviews were conducted by trained research assistants with experience in qualitative interviewing. Interviews were conducted to explore perceptions regarding acceptability for use, practical applications, areas for improvement of the decision aid, and utility in supporting decision-making (Supplement IV). Interviews were approximately 30 min, conducted virtually using zoom, audio recorded, and professionally transcribed.

Data Analysis

Quantitative data was summarized as frequency of responses. Qualitative analysis followed the Rigorous and Accelerated Data Reduction (RADaR) method (Watkins, 2017). First, participants were deidentified and interviews were analyzed separately by two researchers (K.H. & J.C.). Both care partner and provider analyses began by formatting and organizing transcriptions and then creating a phase one data reduction table in a spreadsheet where data were organized by question domains of usability, reactions to the decision aid, and acceptability. Then, two researchers separately read the transcripts from both groups in their entirety to familiarize themselves with the data and identify initial takeaways. Next, applying an inductive approach, the researchers met to discuss notes and ensure clarity of the overarching evaluative objectives focused on participant perspectives of the dementia aid’s acceptability and usability. Following the RADaR methodology, qualitative data obviously unrelated to the research question was removed from the spreadsheet to produce the phase two data reduction table. Researchers then worked independently to develop preliminary codes. Next, researchers shared their initial codes, reached consensus, and removed additional quotes irrelevant to the research question. The researchers then worked inductively to create focused codes (Watkins, 2017) which were recorded and defined in a codebook that reflected thematic components observed across care partner and provider data sets. Definitions and codes were refined as needed to increase clarity and reduce overlap. Lastly, codes were analyzed to produce the final themes (see COREQ Checklist to review the final themes). Efforts to increase trustworthiness of the findings included routinely sharing phases of the qualitative analysis with the full research team to identify potential bias, to gain additional insights, and to reach consensus when the two coders were unable. The researchers also consulted additional University faculty with expertise in qualitative methods to ensure the rigor of the data analysis.

Following separate analyses of quantitative and qualitative data, the results were compared and merged to represent a robust understanding of participant feedback (Creswell, 2014; Fetters et al., 2013).

Results

Table 1 provides the care partner and provider demographic characteristics. Across the care partner and provider surveys and interviews, there were four key findings related to the acceptability and usability of the long-term care planning dementia decision aid.

Table 1.

Demographic Characteristics of Participants.

Characteristic	Providers (n = 11)	Care partners (n = 11)
Gender
Male	4	1
Female	7	10
Racial/ethnic background
White	9	9
Hispanic	2	0
Black	0	1
Asian	0	1
Age
<30 years	0	0
30–44 years	7	0
45–64 years	3	4
>65 years	1	8
Healthcare discipline
Physician	6	N/A
Advanced practice provider^a	2
Social worker	1
Behavioral health provider	2
Years since training
<5 years	5	N/A
6–10 years	1
11–15 years	2
16–20 years	0
21–25 years	1
>25 years	2
Highest education
High school or less	N/A	0
Some college		3
College graduate		2
Any post graduate work		6
Currently working
Full time	N/A	1
Retired		5
Homemaker		2
Other		3
Relationship in dyad
Spouse/partner	N/A	6
Child		5

Advance practice provider includes Physician Assistants or Nurse Practitioners.

Finding 1. Helpfulness of decision aid to inform future care planning

The integrated findings suggested care partners and providers found the decision aid helpful with informing the decision-making process across the illness trajectory and especially related to early introductions of future decisions. Results from the Acceptability Survey indicated care partners (n = 10) found the decision aid to be “very helpful” (n = 6), “somewhat helpful” (n = 1), or “a little helpful” (n = 3) for making decisions related to dementia care. Providers (n = 11) rated the decision aid to be “very helpful” (n = 5), “somewhat helpful” (n = 5), or “a little helpful” (n = 1) for patients and care partners.

Qualitative analysis shed light on how participants perceived the decision aid would be helpful for future care planning. Both care partners and providers cited how the tool might support shared decision-making, future planning, and financial planning. Many care partners described the decision aid would have been helpful early in their caregiving experience. One care partner reflected on her initial impressions of the decision aid and remarked, “I thought, ‘I wish they had something like that when my mom was diagnosed’, that would be real helpful” (care partner 4). Care partners perceived the decision aid would help guide conversations related to care decisions with other family members. Care partner 7 explained she had used the dementia aid prototype to speak with her sisters regarding their mother’s future care. She described how the aid impacted the conversation, “It helped just with the way I could point out my reasons. And, yeah, it just kind of gave me a starting place and things to point out to my sisters” (care partner 7). Many care partners reflected on their experiences with caregiving and validated the information provided was accurate and addressed an important gap in the care of people with dementia. One care partner explained, “There’s so little support. So just being able to have as many sources of support as you can get is tremendously useful” (care partner 9).

Providers perceived the decision aid might be a valuable reference for PLWD and care partners to use in and outside of the clinical setting, highlighting its use as a conversation guide when speaking with PLWD and care partners. A behavioral health specialist elaborated, “To have a vision or a picture of what they can expect, anytime we’re able to set that up. And even if they have done some of this work before, we can talk about that, and kind of go over some of these things in terms of what the pros and cons are” (provider 5). Many providers perceived the decision aid could impact advance care planning, though this was not identified by care partners. A geriatric fellow explained, “I think it would be helpful with advance care planning; I don’t think we have a lot of tools and I will struggle with that piece (provider 8).

Finding 2. Versatility of the Decision Aid in Practice

The merged results indicated the decision aid was found to be appropriate for use in a variety of clinical settings, deliverable in either electronic or paper form, and adaptable for sharing in full or segmented parts. Many participants cited the decision aid’s adaptability in reference to why or how they would recommend the dementia aid to others. In response to the survey question inquiring if participants would recommend the dementia aid to others, a majority confirmed they would recommend to others. Care partners reported they would “definitely” (n = 4) or “probably” (n = 6) recommend the dementia aid to others. Providers reported they would ‘definitely’ (n = 6) or “probably” (n = 5) recommend the aid to other providers taking care of people with dementia.

Both care partners and providers described the versatility of the dementia support aid as a strength. Participants perceived the decision aid would be utilized in different manners depending on several factors including the relationship with the provider, level of insight into disease and prognosis, severity of disease, and timing of decision related discussions. For example, a geriatrician described how sharing the tool would depend on the patient and care partner, “I think it’d be kind of really individualized when to introduce it to people, and there might be some where I might hold off. If they break down in tears every time they talk about dementia, I might wait a little bit. But there are other people where they’re needing more like now” (provider 11).

The decision aid was perceived by both groups to be adaptable across various clinical settings and deliverable based on the PLWD and care partner’s preference for electronic or paper communications. One care partner described, “I’d more likely [read it] online. But my mom, would rather have paper and have something in her hand to read or look at because she comprehends it better that way” (care partner 4). Both care partners and providers imagined the decision aid being used in full or in segmented parts. Regarding whether providers would recommend the decision support aid to patients, a geriatrician responded, “I could see myself [modifying the aid] but I love the basics of it and I would [recommend to patients]. It’s a nice tool to set up any homework because we don’t have anything like this. I can just generate a little print out in [the electronic health record] or put it in the after visit summary. Again, in stages, to say ‘hey, let’s talk about this’ and then they have it to go take it with them” (provider 3).

Finding 3. Preferences for Structure and Content of the Decision Aid

The integrated data showed most care partners and providers felt the decision aid was understandable, pragmatic, and provided necessary information. Most care partners and providers reported the decision aid included “about the right amount of information” (n = 8, and n = 9, respectively). Most care partners reported the decision aid as “very easy to understand” (n = 5) or “easy to understand” (n = 4). Providers found it either “very easy to understand” (n = 4) or “easy to understand” (n = 7).

The qualitative findings expanded on why care partners and providers felt the content of the decision aid was easy to understand. Care partners described satisfaction for the decision aid’s layout and included information. However, some described concerns that the content was oversimplified, felt the information might be too broad, and described a desire for detailed information highlighting the nuances for each stage of the dementia trajectory. In contrast, providers often described the reading level, amount of detail, and content as appropriate for patient and care partner use with some providers describing comprehension levels might be too advanced (despite efforts to achieve an 8th grade reading level). Many providers described the information was laid out in an easy-to-follow manner. For example, a geriatrician stated “My general reaction was that this was very visually, well laid out for our patients and caregivers. I think it is simple enough but manages to capture some pretty complex sort of ideas and options for patients. Including general information is important so we don’t spend too much time talking about things that aren’t an option and we can narrow in on what we can do” (provider 12).

Some care partners and providers cited a preference for a more empathetic tone, given the significance of the dementia diagnosis and emotional implications experienced by caregivers related to increased care needs. As an example, a spousal care partner explained his wife’s diagnosis was difficult to comprehend and emphasized, “I think being more open and being more empathetic because it has such a strong negative impact on the mental health of the caregiver that it deserves– some empathy is warranted” (care partner 3). Similarly, care partner feedback included a desire for more discussion around the emotional impact the decision aid may have on PLWD and care partners.

Some care partners expressed reservations for word choices such as “dementia” on the first page in fear the care recipient may read and experience distress. This concern for stigmatized wording was not identified by providers; however, some acknowledged patient denial and negative reactions (i.e., anxiety towards a dementia diagnosis) might be a challenge to using the decision aid in clinical practice. One provider deliberated, “It’s very stressful, and I can see where it could provoke anxiety in terms of like, especially people who are maybe earlier on, and haven’t really wrapped their minds around all of the education and understanding of the disease course. And this may be overwhelming in terms of, ‘oh my God, I have to start thinking about assisted living and memory care’, and I could see where that could potentially be a little overwhelming for people” (provider 11).

Finding 4. Perceived Shortcomings of Decision aid in Decision-Making

The merged findings suggested most care partners and providers felt the presented information was balanced and with overall limited bias towards a specific long-term care option (e.g., increased support in the home; programs in the community; assisted living or memory care). Most care partners (n = 9) and providers (n = 10) found the decision aid ‘completely balanced’ with respect to home-based and long-term residential care options. Both care partners and providers responded the decision aid was ‘neutral and balanced’ in its presentation that neither option is the best overall choice (n = 10, n = 11, respectively). However, there were still some shortcomings of the decision aid. One care partner found the decision aid to be ‘a little biased towards home-based care treatment options’ (n = 1). Likewise, one provider found the information ‘a little biased towards home-based care options’ (n = 1).

In contrast to quantitative results, the qualitative findings found that some care partners expressed perceptions that the decision aid was slightly biased towards long-term residential care. Among care partners indicating perceptions of bias towards long-term care, these individuals explained long-term residential care did not match their family values and they preferred more information on potential home modifications to safely keep their loved one at home. One care partner described, “I felt like there was this assumption that when things got harder, that then going into a facility was the choice. And I actually think that’s not the case, I think that’s what our culture says, but that’s actually not the case” (care partner 1).

Discussion

This study summarizes a user-centered design process to develop and engage stakeholders in refining a long-term care planning dementia decision aid for use with community-dwelling PLWD, their care partners, and primary care teams. The resulting decision aid uses education and values clarification to support decision-making related to long-term care options, planning, and person-centered care. Aligned with increasing emphasis to engage stakeholders for input when designing multi-user facing tools in the context of dementia (A. S. Hoffman et al., 2020), the development of this decision aid used iterative input from multiple stakeholders. Care partners and providers identified the decision aid as a helpful reference, an entry point for communication, and as a bridge for identifying resources for decision-making throughout the illness trajectory and continuum of care. Following the NIH Stage Model for Behavioral Intervention Development (NIH, n.d.), this study reports findings related to Stage 1A which includes modification, adaptation, or refinement of exisiting interventions. The NIH Stage Model is an iterative model involving six stages (0-5) that may be used to promote development of effective and implementable interventions to ensure health and wellbeing. In line with the Stage Model, the findings of this study suggest the decision aid is ready for pilot testing in primary care after further refinements (Stage 1B) (current version available at https://patientdecisionaid.org/).

Across the literature, many factors are cited to delay long-term care planning discussions (Davies et al., 2021; Mejia et al., 2019; Tilburgs et al., 2018). Use of the decision aid may help provide a systematic approach to long-term care discussions and future planning to potentially reduce challenges common to PLWD, care partners, and health providers associated with these aspects of dementia care (i.e., timing of these conversations, lack of insight on potential future care needs, assuming passive roles in decision making), as well as empower providers to assume a more proactive role. In turn, patients and care partners may feel better equipped to participate in long-term care planning and have greater insight on potential decisions encountered in advanced stages of the disease (Davies et al., 2021; Dening et al., 2018). Based on our findings, we anticipate assessing the following outcomes in future clinical trials: impact on caregiver distress, time to long-term care transition, and care partner and provider comfort with dementia care planning.

Our findings suggested the decision aid aligns with goals of providing person-centered or family-centered care towards supporting family caregivers (The Recognize, Assist, Include, Support, and Engage Act Family Caregiving Advisory Council, 2022). Many care partners and providers reflected on the potential versatility of the decision aid in clinical care and described ways the tool may be used depending on the PLWD and care partner’s unique circumstances. For example, several care partners and providers remarked the aid could be a take-home reference to guide planning and discussions with loved ones. Providers often commented on usability across other specialties and provider types, such as physicians, advanced practice providers, social workers, and mental health providers. Policy directions related to family caregiving increasingly emphasize person-centered care should include clinicians delivering care based on values most important to the individual and also should be inclusive of family caregivers/care partners in developing the plan of care and with intention to balance the needs of both individuals (The Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council, 2022). This tool may offer flexibility for primary care providers to more readily tailor discussions to the patient’s needs.

It is prudent to also consider implementation and dissemination factors regarding use of this long-term care planning dementia decision aid. Volk et al. (2018) highlights a need for understanding factors associated with effective use of aids in clinical practice to minimize implementation challenges related to the use of decision aids in clinical practice. Thus, to greater deliver patient-centered dementia care, implementation considerations may include, considerations of when in the workflow to review information with patients and families, what format to present (i.e., printed, electronic), which provider or team member may be most appropriate to share the information, and selective use or tailoring information based on readiness of participants (Volk et al., 2018; Lord et al, 2015). We noted care partners and providers emphasized the timing of introducing the decision aid was an important aspect regarding the clinical use of the decision aid. Care partners often cited a need for the provided information early in the disease process while providers more frequently described their considerations of timing were guided by the perceived readiness of PLWD or care partners to engage in long-term care planning conversations. It is important to find balance between these perspectives as it is possible that adverse events could occur (e.g., reduced autonomy with introducing supportive care too early, safety concerns with introducing supports too late). Future research should examine factors related to the decision aid’s implementation in primary care.

Both care partners and providers identified aspects of the decision aid that may limit its use in clinical practice and warrant consideration in future versions and aids. First, consistent with previous findings regarding barriers to decision-making (Lord et al, 2015; Tilburgs et al., 2018), care partners identified adverse emotional factors (e.g., guilt, sadness, stress, denial) as a potential barrier to using the decision aid. Care partners perceived the dementia aid lacked empathetic communication and cited this as a potential barrier for use with patients and care partners. Tate et al. (2021) identified decision aids to support care planning are often challenged by the emotional complexity such discussions may present to families, pointing to the need for continued efforts in this area. Guided by feedback gathered through this evaluation, next steps to refine the decision aid will include, revisions to greater focus on including non-stigmatizing language, empathetic content, and attending to the emotional aspects of living with dementia. Additionally, neither care partners nor providers found the initial version of the decision aid was explicitly useful in clarifying patients’ or care partners’ values, such as through question prompts and space for writing out concerns and preferences. Further research and refinement is needed to identify ways of emphasizing values and trade-offs in the long-term care planning decision making process (current version available at https://patientdecisionaid.org/).

Limitations

This study had several limitations. First, the sample drew from a single academic geriatric clinic, limiting generalizability to community practices, rural, and other underserved populations. This study includes a relatively small sample with limited racial and ethnic diversity as it was mostly White care partners and providers. Furthermore, we were unable to include PLWD, even though the lived experiences of PLWD related to decision making and future planning are important perspectives. Most care partners had at least some college education background, which may have reflected their preferences for more nuanced and detailed informational content and may not accurately reflect the educational attainment of most Americans living with dementia or care partners. Further evaluation of the dementia aid with a larger, racially, and ethnically diverse sample is warranted to improve generalizability of findings to a broader, more diverse population of PLWD, their care partners, and providers.

Conclusion

This study incorporated care partner and interdisciplinary geriatric provider input to develop and refine a dementia-specific decision aid to support care planning for long-term needs. Based on initial acceptability and usability by both care partners and providers, future research is warranted to pilot test the use of the decision aid to improve decision making for long-term care planning for PLWD. Ultimately, this area of research may have implications for promoting person-centered care and dignity for PLWD as well as decisional support for families across the dementia trajectory.

Supplemental Material

sj-docx-1-ggm-10.1177_23337214231163033 – Supplemental material for Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype

Supplemental material, sj-docx-1-ggm-10.1177_23337214231163033 for Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype by Kathryn Huber, Jessica Cassidy, Adreanne Brungardt, Kathleen Resman, Evan Plys, Taryn Bogdewiecz, Dan D. Matlock and Hillary D. Lum in Gerontology and Geriatric Medicine

Supplemental Material

sj-docx-2-ggm-10.1177_23337214231163033 – Supplemental material for Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype

Supplemental material, sj-docx-2-ggm-10.1177_23337214231163033 for Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype by Kathryn Huber, Jessica Cassidy, Adreanne Brungardt, Kathleen Resman, Evan Plys, Taryn Bogdewiecz, Dan D. Matlock and Hillary D. Lum in Gerontology and Geriatric Medicine

Supplemental Material

sj-docx-3-ggm-10.1177_23337214231163033 – Supplemental material for Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype

Supplemental material, sj-docx-3-ggm-10.1177_23337214231163033 for Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype by Kathryn Huber, Jessica Cassidy, Adreanne Brungardt, Kathleen Resman, Evan Plys, Taryn Bogdewiecz, Dan D. Matlock and Hillary D. Lum in Gerontology and Geriatric Medicine

Supplemental Material

sj-docx-4-ggm-10.1177_23337214231163033 – Supplemental material for Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype

Supplemental material, sj-docx-4-ggm-10.1177_23337214231163033 for Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype by Kathryn Huber, Jessica Cassidy, Adreanne Brungardt, Kathleen Resman, Evan Plys, Taryn Bogdewiecz, Dan D. Matlock and Hillary D. Lum in Gerontology and Geriatric Medicine

Supplemental Material

sj-pdf-5-ggm-10.1177_23337214231163033 – Supplemental material for Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype

Supplemental material, sj-pdf-5-ggm-10.1177_23337214231163033 for Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype by Kathryn Huber, Jessica Cassidy, Adreanne Brungardt, Kathleen Resman, Evan Plys, Taryn Bogdewiecz, Dan D. Matlock and Hillary D. Lum in Gerontology and Geriatric Medicine

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported in part through the Centers for Medicare and Medicaid Services Primary Care First Initiative at UCHealth Seniors Clinic as well as the Colorado Clinical & Translational Sciences Institute (CCTSI) (NIH/NCATS Colorado CTSA Grant Number UL1 TR002535) for use of REDCap-based data management.

Ethical Statement

This study was approved by the Colorado Multiple Institutional Review Board (# 21-4336). All the authors in the manuscript have agreed for authorship. This manuscript has not been submitted or published anywhere.

ORCID iDs

Jessica Cassidy

Hillary D. Lum

Supplemental Material

Supplemental material for this article is available online.

References

Barry

M. J.

Fowler

F. J.

Mulley

A. G.

Henderson

J. V.

Wennberg

J. E.

(1995). Patient reactions to a program designed to facilitate patient participation in treatment decisions for benign prostatic hyperplagia. Medical Care, 33(8), 771–782.

Bhatt

Walton

Stoner

C. R.

Scior

Charlesworth

(2020). The nature of decision-making in people living with dementia: A systematic review. Aging & Mental Health, 24(3), 363–373. https://doi.org/10.1080/13607863.2018.1544212

Creswell

J. W.

(2014). Research design: Qualitative, quantitative, and mixed methods approaches (4th ed.). SAGE.

Davies

Sampson

E. L.

West

DeSouza

Manthorpe

Walters

Dening

K. H.

Ward

(2021). A decision aid to support family carers of people living with dementia towards the end of life: Coproduction process, outcome and reflections. Health Expectations, 24, 1677–1691. https://doi.org/10.1111/hex.13307

Davies

Schiowitz

Rait

Vickerstaff

Sampson

(2019). Decision aids to support decision-making in dementia care: A systematic review. International Psychogeriatrics, 31(10), 1403–1419. https://doi.org/10.1017/S1041610219000826

Dening

K. H

Sampson

E. L.

De Vries

(2018). Advance care planning in dementia: Recommendations for healthcare professionals. Palliative Care: Research and Treatment, 17(1), 88. http://doi.org/10.1177/2515841418826579

Elwyn

O’Connor

Stacey

Volk

Edwards

A. G.

Coulter

Thomson

Barratt

Barry

Bernstein

Butow

Clarke

Entwistle

Feldman-Stewart

Holmes-Rovner

Llewellyn-Thomas

Moumijid

Mulley

Ruland

. . . Whelan

(2006). International Patient Decision Aids Standards (IPDAS) Collaboration. Developing a quality criteria framework for patient decision aid: Online international delphi consensus process. British Medical Journal, 333(7565), 417–419. http://doi.org/10.1136/bmj.38926.629329.

Fetters

M. D.

Curry

L. A.

Creswell

J. W.

(2013). Achieving integration in mixed methods designs—principles and practices. Health Services Research, 48, 2134–2156. http://doi.org/10.1111/1475-6773.12117

Fortinsky

R. H.

(2001). Health care triads and dementia care: Integrative framework and future directions. Aging & Mental Health, 5(Suppl. 1), 35–48. https://doi.org/10.1080/713649999

10.

Frank

Shubeck

Schicker

Webb

Maslow

Gitlin

Hummel

C. H.

Kaplan

E. K.

Kaplan

E. K.

Marquez

Nicholson

Phillips

Van Buren

Epstein-Lubow

(2020). Contributions of persons living with dementia to scientific research meetings. Results from the national research summit on care, services, and supports for persons with dementia and their caregivers. The American Journal of Geriatric Psychiatry, 28(4), 421–430.

11.

Harris

P. A.

Taylor

Thielke

Payne

Gonzalez

Conde

J. G.

(2009). Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics, 42(2), 377–381. http://doi.org/10.1016/j.jbi.2008.08.010

12.

Hoffman

Bateman

D. R.

Bartels

Blandin

Santulli

R. B.

Lee

Tang

(2013). Patient and caregiver needs and preferences for decision support interventions in Alzheimer’s disease. The American Journal of Geriatric Psychiatry, 21(3), S98–S99. http://doi.org/10.1016/j.jagp.2012.12.130

13.

Hoffman

A. S.

Bateman

D. R.

Ganoe

Punjasthitkul

Das

A. K.

Hoffman

D. B.

Housten

A. J.

Peirce

P. A.

Dreyer

Tang

Bennett

Bartels

S. J.

(2020). Development and field testing of a long-term care decision aid website for older adults: Engaging patients and care partners in user-centered design. The Gerontologist, 60(5), 935–946. https://doi.org/10.1093/geront/gnz141

14.

Iliffe

Robinson

Brayne

Goodman

Rait

Manthorpe

Ashley

(2009). Primary care and dementia: 1. diagnosis, screening and disclosure. International Journal of Geriatric Psychiatry, 24(9), 895–901. https://doi.org/10.1002/gps.2204

15.

Lord

Livingston

Cooper

(2015) A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia. International Psychogeriatrics, 27(8) 1301–1312. https://doi.org/10.1017/S1041610215000411

16.

Lord

Livingston

Cooper

(2017). A feasibility randomised controlled trial of the DECIDE intervention: Dementia carers making informed decisions. BJPsych Open, 3(1), 12–14. https://doi.org/10.1192/bjpo.bp.116.003509

17.

Lord

Livingston

Robertson

Cooper

(2016). How Persons with Dementia and their families decide about moving to a care home and support their needs: Development of a decision aid, a qualitative study. BMC Geriatrics, 16(1), 1–8.

18.

Mejia

A. M.

Smith

G. E.

Wicklund

Armstrong

M. J.

(2019). Shared decision making in mild cognitive impairment. Neurology: Clinical Practice, 9(2), 160–164.

19.

Possin

K. L.

Merrilees

Bonasera

S. J.

Bernstein

Chiong

Lee

Wilson

Hooper

S. M.

Dulaney

Braley

Laohavanich

Feuer

J. E.

Clark

A. M.

Schaffer

M. W.

Schenk

A. K.

Heunis

Ong

Cook

K. M.

Bowhay

A. D.

. . . Miller

B. L.

(2017). Development of an adaptive, personalized, and scalable dementia care program: Early findings from the Care Ecosystem. PLoS Medicine, 14(3), 1–10. https://doi.org/10.1371/journal.pmed.1002260

20.

The Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council. (2022). 2022 national strategy to support family caregivers. https://acl.gov/sites/default/files/RAISE_SGRG/NatlStrategyToSupportFamilyCaregivers.pdf

21.

Scherer

L. D.

Matlock

D. D.

Allen

L. A.

Knoepke

C. E.

McIlvennan

C. K.

Fitzgerald

M. D.

Kini

Tate

C. E.

Lin

Lum

H. D.

(2021). Patient roadmaps for chronic illness: Introducing a new approach for fostering patient-centered care. MDM Policy and Practice, 6(1), 1–11. https://doi.org/10.1177/23814683211019947

22.

Tate

C. E.

Venechuk

Pierce

Khazanie

Ingle

M. P.

Morris

M. A.

Allen

L. A.

Matlock

D. D.

(2021). Development of a decision aid for patients and families considering hospice. Journal of Palliative Medicine, 24(4), 505–513. https://doi.org/10.1089/jpm.2020.0250.

23.

Tilburgs

Vernooij-Dassen

Koopmans

van Gennip

Engels

Perry

(2018). Barriers and facilitators for GPs in dementia advance care planning: A systematic integrative review. PLoS ONE, 13(6), e0198535.

24.

Volk

R. J.

Coulter

(2018). Advancing the science of patient decision aids through reporting guidelines. BMJ Quality & Safety, 27(5), 337–339. https://doi.org/10.1136/bmjqs-2017-007657

25.

Watkins

D. C.

(2017). Rapid and rigorous qualitative data analysis: The “RADaR” technique for applied research. International Journal of Qualitative Methods, 16(1), 1–9. https://doi.org/10.1177/1609406917712131

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.02 MB

0.03 MB

1.39 MB