Psychosocial treatment preferences of persons living with young-onset dementia and their partners

Abstract

Persons living with young-onset dementia and their partners often experience elevated emotional distress as they cope with an unexpected progressive illness during an active life stage (typically ages 45–64 years). Despite their heightened emotional distress, psychosocial resources are both limited and lack the specificity to meet the unique needs of both partners. Our aim was to gain an in-depth understanding of the psychosocial treatment preferences of persons with young-onset dementia and their partners—an important first step in developing a tailored intervention. We conducted semi-structured dyadic interviews with persons with young-onset dementia and their partners (N = 23) and used a hybrid deductive–inductive approach to thematic analysis. We identified 12 themes across four domains: (1) perceptions of available and lacking resources, (2) preferences for program content, (3) preferences for program format, and (4) barriers and facilitators to participation. Couples indicated there is a lack of specific and family-oriented resources, which can create more stress and relationship strain. Couples endorsed support for a virtual, dyadic intervention delivered shortly after diagnosis focused on providing tools to cope with difficult emotions and symptom progression and enhance communication and meaningful daily living. They also identified potential barriers to program participation and offered suggestions to promote engagement. By using a qualitative approach, we were able to gather nuanced information that can be used to directly inform a feasible, accepted, and person-centered psychosocial intervention for persons with young-onset dementia and their partners.

Introduction

Young-onset dementias encompass a number of progressive neurological conditions with typical symptom onset prior to age 65 years (Hoppe, 2018). Early symptoms can include subtle personality, mood, and behavioral changes that are frequently unrecognized or misattributed to other concerns (e.g., life stress and mood disorders) (Hoppe, 2018; Rosness et al., 2016). Symptoms can eventually lead to significant deterioration in day-to-day functioning, including the ability to work and manage personal responsibilities. Approximately 67–98 out of 100,000 people aged 45–64 years carry a diagnosis of young-onset dementia (Kuruppu & Matthews, 2013) and prevalence rates are increasing with more awareness and better diagnostic methodologies (Ducharme & Dickerson, 2015). Both persons with young-onset dementia and their partners are markedly impacted by the diagnosis. They both endorse high rates of chronic emotional distress (e.g., depression and anxiety), which can negatively impact relationship quality and communication over time (Kilty et al., 2019; Millenaar et al., 2016). These rates are not surprising, given the number of stressors (e.g., loss of employment, increased caregiving, and change in roles) and difficult emotions (e.g., sadness, anger, and grief) that couples can experience together after symptom onset (Bannon et al., 2020).

Despite these challenges, resources to help persons with young-onset dementia and their partners navigate stressors individually and together are lacking (Bannon et al., 2020; O’Malley et al., 2019). In fact, in a recent survey of healthcare professionals, 54% reported no access to consultation services and 28% reported no post-diagnostic support (Stamou, La Fontaine, Gage et al., 2021). There are very few existing psychosocial interventions specific to young-onset dementia, and those that exist have several important limitations. First, psychosocial support tends to be geared toward spouses alone, excluding persons with young-onset dementia (O’Malley et al., 2019). This is particularly harmful for persons with young-onset dementia, given that they often experience a “loss of personhood” (Richardson et al., 2016) after diagnosis. Additionally, research in later-onset dementias indicates that both partners play an active role in maintaining the quality and closeness of their relationship, especially in the early stages, highlighting the importance of involving both of them in psychosocial services (Hellström et al., 2007). Recent systematic reviews have identified only three psychosocial programs that include persons with young-onset dementia, and all are focused on employment (Bannon et al., 2020; Richardson et al., 2016). Second, services tend to focus on managing medical or logistical aspects of young-onset dementia and fail to offer support or skills to reduce couples’ emotional distress (Jones et al., 2018). Third, given the lower prevalence of young-onset dementia compared to later-onset dementias, dementia-related support tends to be geared toward older adults and those in later stages of the disease (Roach & Drummond, 2014), and therefore do not address the unique challenges faced by those coping with dementia in earlier life stages (Bannon et al., 2020).

There is a critical need to develop psychosocial interventions that address both partners’ needs and challenges after diagnosis. Outside of young-onset dementia, dyadic (i.e., patient and spouse together) interventions have been efficacious and cost-effective ways to prevent emotional distress and preserve relationship quality for couples coping with chronic and progressive health conditions (e.g., cancer, later-onset dementia, and acute neurological conditions) (Badr & Acitelli, 2017; Martire et al., 2010; Vranceanu et al., 2020). For example, our team developed and implemented Recovering Together, the first dyadic intervention for survivors of acute neurological injuries and their informal caregivers, which aimed to prevent chronic emotional distress (Vranceanu et al., 2020). Recovering Together was informed by several theoretical frameworks (i.e., family strength vulnerability model, dyadic longitudinal model, and resiliency framework) and prior literature that emphasizes the interdependence of emotional distress and coping behaviors between survivors and their caregivers (Meyers et al., 2020; Vranceanu et al., 2020). The program was iteratively developed and optimized with feedback from patients, caregivers, and medical teams (McCurley et al., 2019). This program, Recovering Together, included both in-person and virtual sessions and exhibited excellent feasibility, acceptability, and was associated with sustained improvement in depression and anxiety in both partners in a pilot randomized clinical trial (Vranceanu et al., 2020). A similar dyadic intervention based on these theoretical frameworks may be beneficial for couples navigating young-onset dementia, given their role as care-partners and experience of emotional distress after diagnosis. To our knowledge, no dyadic preventative skills–based programs for persons with young-onset dementia and their partners exist in the United States.

The current study

Our goal of this study was to gather in-depth information on couples’ perceptions of current resources and preferences for psychosocial support. It is an important first step in developing a feasible, acceptable, and person-centered dyadic intervention that seeks to prevent emotional distress in couples coping with young-onset dementia. We collected data regarding couples’ preferences for treatment delivery, content and skills, and procedures to optimize intervention development. By interviewing partners together (i.e., dyadic interviews), we sought to learn about couples’ shared perspectives and needs. Our primary aims were to characterize couples’: (1) perceptions of available and lacking resources, (2) preferences for program content and skills, (3) preferences for program format, and (4) barriers and facilitators to program participation.

Methods

Participants

Table 1 displays demographic information (N = 23 couples). Participants were persons with young-onset dementia and their partners. Couples were: (1) adults (at least 18 years of age), (2) English-speaking, (3) in a cohabitating romantic relationship, and (4) comprised of one partner with a young-onset dementia diagnosis (e.g., frontotemporal lobar degeneration and Alzheimer’s disease). Couples were excluded if: (1) the cognitive impairment of the person with dementia was too severe to meaningfully participate (determined by Massachusetts General Hospital (MGH) Frontotemporal Disorders Unit clinical team) or (2) one partner refused to participate in live video interview.

Table 1.

Sociodemographics and clinical data (N = 23 couples).

	Partner (N = 23)	Persons living with young-onset dementia (N = 23)
Sex  Female	13 (57%)	11 (48%)
Male	10 (43%)	12 (52%)
Race/ethnicity  White, non-Hispanic or Latino	21 (91%)	20 (87%)
White, Hispanic or Latino	0	1 (4%)
Asian, non-Hispanic or Latino	1 (4%)	0
Multiracial, non-Hispanic or Latino	0	1 (4%)
Not reported	1 (4%)	1 (4%)
Education  High school degree	1 (4%)	0
Some college/associate’s degree	2 (9%)	4 (17%)
4-year college/bachelor’s degree	8 (35%)	10 (43%)
Graduate/professional degree	12 (52%)	9 (39%)
Diagnosis  Atypical Alzheimer’s disease	N/A	8 (35%)
Typical Alzheimer’s disease	N/A	4 (17%)
Behavioral variant FTLD	N/A	4 (17%)
Language variant FTLD	N/A	2 (9%)
Atypical FTLD	N/A	1 (4%)
Prodromal FTLD	N/A	1 (4%)
Progressive supranuclear palsy	N/A	2 (9%)
Unspecified early onset dementia	N/A	1 (4%)
Years in relationship  M ± SD (min–max)	33.70 ± 9.65 (13–48)	33.70 ± 9.65 (13–48)
Age at interview  M ± SD (min–max)	60.52 ± 5.41 (49–69)	61.30 ± 4.65 (54–70)
Age at diagnosis  M ± SD (min–max)	N/A	57.87 ± 5.33 (4567)
Years from symptom onset to diagnosis  M ± SD (min–max)	N/A	2.72 ± 1.81 (07)

FTLD: frontotemporal lobar degeneration.

Procedures

We recruited participants between January and August 2020 through MGH Frontotemporal Disorders Unit, MGH research announcements, and social media support groups for young-onset dementia. The MGH Institutional Review Board approved the study. Thirty-eight couples expressed interest in the study. We contacted couples by phone to share information about the study and screen for eligibility. Of them, five couples were not eligible, four were no longer interested in participating, and six were unable to be reached. For couples who were eligible and interested (N = 23), we collected written informed consent electronically from both partners. Then, a research coordinator scheduled a dyadic interview using Zoom Healthcare, a secure virtual platform, with the study clinician for the most preferable time for couples to optimize engagement of both partners.

A PhD clinical psychologist with expertise in couples therapy conducted the virtual semi-structured interviews with the couples. The clinician received biweekly supervision by a multidisciplinary team at MGH Frontotemporal Dementia Unit, which included a neurologist, neuropsychologist, clinical psychologists, speech-language pathologist, and the spouse of a deceased person who had young-onset dementia. Throughout the interview, the clinician encouraged both partners to share their perspectives on their perceptions and preferences for psychosocial support, including if they disagreed or had different perspectives. They also ensured that both partners had the opportunity to respond to all questions, and if one partner spoke more frequently, the clinician encouraged the other partner to share their perspective as well.

We developed the semi-structured interview script as a multidisciplinary team. Our interview questions were open-ended; however, we also included specific questions based on our qualitative meta-synthesis of young-onset dementia research and prior qualitative work with nurses and couples coping with acute neurological illnesses, which was used to develop Recovering Together (e.g., Bannon et al., 2020; McCurley et al., 2019; Vranceanu et al., 2020). We asked about proposed content based on skills and topics common to a number of individual and dyadic psychosocial programs for neurological illnesses, including Recovering Together (e.g., mindfulness, dialectical thinking, and effective communication) (Larochette et al., 2019; Vranceanu et al., 2020). We also included questions about the intervention format based on Recovering Together (e.g., virtual, dyadic, and short-term evidence–based program) (McCurley et al., 2019; Vranceanu et al., 2020). Interviews took approximately 1 h to complete. They were audio recorded, de-identified, and transcribed verbatim by trained research assistants.

Data analytic plan

Our data analytic approach utilized a combination of deductive and inductive coding techniques (Fereday & Muir-Cochrane, 2006). We sought to understand couples’ perceptions of existing support resources and preferences for a psychosocial program. Accordingly, our dyadic interviews covered the following domains: (1) perceptions of available and lacking resources, (2) preferences for program content and skills, (3) preferences for program format, and (4) barriers and facilitators to program participation. We used these four domains to structure the data interpretation process (i.e., sought to identify themes and subthemes within each of these four domains). Domains 1 and 4 (i.e., perceptions of resources and barriers and facilitators) primarily utilized inductive techniques in that themes and subthemes were derived from the data. In contrast, domains 2 and 3 (i.e., preferences for program content and format) utilized a hybrid deductive–inductive approach, given that findings were informed by literature and our prior work, but we allowed for novel themes and subthemes to emerge from the data. We describe the sequence of analytic steps in detail below.

First, transcribed interviews were coded by two members of the team (M.R., P.P.) independently using the QSR International’s NVivo 12 qualitative data analysis software package (QSR International Pty Ltd, 2020). We developed the coding framework (i.e., “codebook”) to capture findings related to specific questions of interest (e.g., “intervention delivery modality,” “timing of intervention,” and “barriers to participation”) as well as novel themes emerging from the data. To capture novel themes from the data, we utilized an “open” coding procedure in which four team members (V.G., S.B., M.R., P.P.) read several transcripts and devised codes to represent emerging findings (e.g., “desire for practical/logistical support”). Reliability between coders was strong (Kappa = 0.94). Following coding, four members of our team independently extracted couple-level themes and subthemes within each domain (V.G., S.B., M.R., P.P.). Our approach to identifying findings was flexible and iterative. We engaged in a series of collaborative discussions to revise themes and subthemes within each domain to reduce redundancies and resolve inconsistencies.

Findings

Table 2 displays domains, themes, and subthemes. Within our four a priori-defined domains, we identified a total of 12 themes. We describe the themes and subthemes in detail below along with illustrative quotes from dyads (persons with dementia or their partners).

Table 2.

Domains, themes, and subthemes.

Domain	Themes and subthemes
Perceptions of available and lacking resources	Theme 1: Perceptions of available psychosocial resources Early psychosocial support rare, but help (couples or individuals) Group therapy promotes social support, but can exacerbate emotional distress Theme 2: Lack of appropriate resources Lack of timely support and coordination among providers Lack of information on young-onset dementia (subtypes, prognosis, and treatment) Lack of age-appropriate resources Lack of logistical support for planning (e.g., finances, legal, housing, and safety) Lack of support available for family members (e.g., spouses and children)
Preferences for program content and skills	Theme 1: Staying in the here and now Mindfulness and present moment awareness skills Cultivate acceptance of symptoms Theme 2: Coping with loss, changes, and uncertainty Grieve losses and adjust to changes Cope with uncertain prognosis and future Theme 3: Interpersonal and communication skills Promote couple communication and interpersonal skills Theme 4: Managing progressive symptoms and planning for future Education on self-care and lifestyle behaviors to slow symptom progression Practical and logistical planning and problem-solving for future Theme 5: Meaning-making and promoting identity Values to guide decision-making on how couples spend their time together Promote self-efficacy, independence, and identity continuity
Preferences for program format	Theme 1: Modality, timing, and duration Preference for web-based and live video format to improve access to services Desire for psychosocial support to begin early after diagnosis Time-limited program acceptable to promote adjustment (e.g., 6 weeks) Theme 2: Dyadic vs. individual participation Preference to participate as a couple (when person with dementia can meaningfully engage) Desire for flexibility in program (e.g., space to share individual experiences) Theme 3: Individualized delivery and home practice Individualized content and skills help meet couples’ unique stressors and needs Materials in multiple formats useful (e.g., print, web-based, and live demonstration) Importance of home practice exercises for learning and preparing
Barriers and facilitators to program participation	Theme 1: Barriers to participation Concerns about overburdening spouses (e.g., time and effort) Initial resistance/avoidance to engage in psychosocial services Anxiety/concerns discussing difficult topics together Dementia symptoms may interfere with engagement Theme 2: Facilitators to participation Examples of other couples’ experiences to inform problem-solving and coping Program where couple can participate in together Virtual program to overcome barriers and minimize burden

Domain 1: Perceptions of available and lacking resources

This domain encompasses two themes related to couples’ perceptions about available psychosocial resources as well as resources that are needed.

Theme 1: Perceptions of available psychosocial resources.

Couples said that psychosocial resources for young-onset dementia were difficult to find:

“I would say resource wise, that is the other thing that we weren’t finding up here…it is so rare.” (Partner, D4)

However, when couples did engage in individual psychosocial support, they found it helpful for managing difficult emotions:

“The best thing I did was I kept going to counseling …she got me to understand better what is happening, why it is happening, how to deal with it, how not to deal with it.” (Person with dementia, D11)

Couples who received more information (e.g., specific medical information and support in advanced care planning) felt better prepared to manage stressors individually and together:

“[Provider] got us in touch with many things whether it is to Google it and read about it or whether to visit something and interact with X, Y, Z. He opened a lot of doors for us and knowledge is power you know especially being chucked in the deep well with no lights whatsoever, and you feel in the dark and in complete darkness.” (Partner, D16)

Support groups were the most common psychosocial resource available, but couples’ responses to them were mixed. On the one hand, couples said support groups were helpful for normalizing their experiences, enhancing social support, and gaining information about symptoms and care:

“It was good to know that other people were having these experiences and managing their life.” (Partner, D1)

“It’s a good group. There’s a lot of good information. There’s a lot of caring. There’s a lot of opportunity to exchange…I can share a lot with some of the other people that are starting their journey.” (Partner, D6)

On the other hand, they explained that other group members were often older adults and/or navigating more advanced dementias, which made them feel “disconnected from the group:”

“People were so far along in the Alzheimer’s process, that I felt like, ‘This is too much. I don’t think I want to listen to people who were just beginning to hate their partner because they couldn’t do anything.” (Partner, D1)

“They are in a different place than we are…because I wasn’t in the same place, it frightened me, so I disconnected from the group.” (Partner, D7)

Theme 2: Lack of appropriate resources.

Couples endorsed a lack of adequate young-onset dementia resources. They described feeling frustrated with issues related to the available resources, including a lack of timely responses and coordination among medical care providers:

“It took a while to get an appointment. We’re talking about weeks. So it was like, we’ve got to handle our situation now, not weeks from now.” (Partner, D10)

“There wasn’t really smooth between the clinical teams and the research teams. They kept bumping on communication and stuff. Again, making it a little more work on my part to keep it straightened out.” (Person with dementia, D4)

Couples endorsed a lack of appropriate resources and wanted more specific resources on young-onset dementia to learn how to manage daily challenges and progressive symptoms:

“I can look online at alzheimers.org but at that point he hadn’t been diagnosed with Alzheimer’s, he had primary progressive aphasia, and I couldn’t find anything local for that for younger onset where people might understand our situation being a little bit different.” (Partner, D2)

“They didn’t have any kind of services. And especially being 50 – I remember going down to the Senior Center, and we walked through and we were like, ‘No.’” (Partner, D5)

They also expressed the need for various (e.g., financial, legal, housing, safety, and prognostic) resources that would help them plan for the future:

“I wish somebody sort of said, you know, you might want to check all these things, you might want to do it sooner- you might want to make sure that he lists all his passwords somewhere before he doesn’t remember what they are anymore.” (Partner, D2)

In addition, couples were interested in psychological resources for their family and tools to help them communicate about young-onset dementia with their broader social network:

“I’d say, can you get a counselor for my daughter? I’m very worried about her, looking back to those days, right? And my daughter, my wife, myself.” (Partner, D10)

“Like my mother-in-law - just they’re hopeless and not having any clue as to what is happening. So I think if something can be done on the outside, it would help a lot of people.” (Partner, D22)

Domain 2: Preferences for program content and skills

This domain includes five themes related to couples’ preferences for psychosocial program content and skills. We inquired about specific skills that have been relevant in our prior work and within the young-onset dementia literature (Larochette et al., 2019; Vranceanu et al., 2020). We also encouraged couples to share additional coping skills that may have been helpful shortly after diagnosis.

Theme 1: Staying in the here and now.

Couples endorsed the value of practicing being present in the midst of uncertain symptom progression and prognosis. They expressed interest in learning mindfulness skills to help them focus on the present moment and cope with ongoing stressors:

“Would have been very helpful to say, ‘Slow it down a little! You don’t have to fix everything this afternoon.’” (Partner, D1)

“When I start getting stressed over the day-to-day and just getting really down…I would need to kind of pull myself away or be able to use a skill to be able to take a step back.” (Partner, D23)

They also described the benefits of accepting changes associated with young-onset dementia. Cultivating acceptance would help them adjust to and collaboratively manage these challenges:

“It’s a very important skill… you’re just changing and I am fine with that…have to learn to teach acceptance of changes with what has been happening…as the disease progresses you may have to change your way.” (Person with dementia, D9)

Theme 2: Coping with loss, changes, and uncertainty.

Couples were interested in skills that would help them grieve the losses and identity changes related to young-onset dementia (e.g., loss of employment and routine activities) and described the importance of those skills:

“Part and parcel with grief. How have you changed? How do you have to change? Everyone has left something. Everyone has left a former activity of some kind.” (Person with dementia, D15)

“You’re adjusting to the fact that you know your life is not going to be what you expected.” (Partner, D6)

Given that “uncertainty is a very big part of dementia” (Person with dementia, D9), couples were interested in learning skills to cope with challenges outside of their control:

“What can I anticipate? What’s going to happen next? Because now that I’ve experienced all of the bad and I can probably list all of those, it would be nice to know what the future is.” (Partner, D14)

Theme 3: Interpersonal and communication skills.

Couples endorsed an interest in skills that would help them manage dementia together. Given the cognitive changes that persons with young-onset dementia can experience, couples said that learning ways to adapt communication and regulate difficult emotions can help promote open communication and enhance well-being:

“Communicating. The best way to adjust to new communication modes. And what might help…understanding the changes in the caregivers behavior that will have to happen because they can’tchange the behaviors ofthe patient.” (Partner, D7)

“Important to figure out how to communicate. The two people that are involved or the family that is involved…Try to keep their emotions…tools to keep people as calm as they can be.” (Partner, D15)

When asked about specific communication strategies to address, couples highlighted that “active listening” and validation help promote honest conversations about difficult topics:

“Validating your thoughts feelings and concerns by actively listening to what you’re saying…it may be best to put more emphasis on teaching the listening skill to the caregiver because with the dementia and especially if it starts to progress the loved one is more and more frustrated with what’s going on around them.” (Person with dementia, D9)

Theme 4: Managing progressive symptoms and planning for the future.

Couples expressed an interest in skills that would help them manage symptoms and wanted to learn about lifestyle changes (e.g., nutrition and exercise) that might slow disease progression and promote healthy aging:

“What do you do for your diet, what can you do for exercise, what are all the things you can do to be proactive to slow things down as much as we possibly can?” (Partner, D5)

They were also interested in skills to help them plan for the future, particularly with information about medical, financial, legal, and home care components of care planning:

“You’ve got a medical component, you’ve got, um, a legal component, and then you’ve got you as a couple, so how do you as a couple get strong or stay strong through the course of it.” (Partner, D17)

They felt that learning problem-solving skills for practical issues may increase perceived control and make the process more manageable:

“I was overwhelmed with trying to figure out next steps and where do I go, so any kind of these are the things you need to be thinking about…I am a task to do list type person, so anything like that would be helpful.” (Partner, D4)

Theme 5: Meaning-making and promoting identity.

Couples underscored the importance of finding meaning in their experiences and were interested in skills to identify their values and use them to guide daily activities and future plans together. Some couples provided examples of how they used their values to inform their plans for the future and quality time together (e.g., relocating and taking a trip):

“How about ways for the person who has the disease to still feel useful in life? That’s a topic that I would like…I think when a person feels like all the stuff that they used to do in their life that brought them joy…feel connected, when that gets taken away, how do you still make it so that you’re feeling like your life is meaningful.”(Partner, D1)

“…Nostalgic regret about things people didn’t do with their spouses after the fact and obviously you don’t want to be saying that if you can help it. Those kinds of things would be good to think about.” (Partner, D13)

Similarly, couples felt it was key for persons with young-onset dementia to maintain a sense of self and engage in activities that promote self-efficacy and identity continuity (e.g., individual hobbies and involvement in community):

“Focus on the I in identity. That you’re still you.” (Person with dementia, D9)

“She really enjoyed reading to our neighbor. It gave her so much positive energy and sense of self...she has such a caring, empathic side, that would have been for her as a unique individual, a way for her to feel useful.” (Partner, D10)

Domain 3: Preferences for program format

This domain encompasses three themes pertaining to couples’ preferences for the format of a psychosocial program. Couples provided their feedback on a proposed virtual, 6-week dyadic intervention delivered shortly after diagnosis as well as an individualized, multi-modal program (Vranceanu et al., 2020).

Theme 1: Modality, timing, and duration.

Couples were receptive to the format, timing, and duration of the proposed psychosocial support intervention. They said that a virtual format for intervention delivery would be accessible and help overcome barriers to participation, such as transportation:

“Yeah, and I think the video program is easy because you don’t have to go anywhere, we’re in our home, it’s comfortable. I think that works.” (Partner, D2)

Regarding timing, couples endorsed that a program shortly after diagnosis would be beneficial:

“The sooner you have treatments or programs after diagnoses, the better.” (Person with dementia, D22)

“Yeah, I think early on, it really is devastating. So to have known that support is there… yeah, I think initially right out of the gate, that’d be tremendously helpful.” (Partner, D5)

Couples said the suggested 6-week time frame for intervention duration was acceptable. They endorsed that “regular interactions over 6 weeks” (Partner, D13) would help them adjust to the initial challenges emerging after diagnosis. Notably, some couples pointed out that stressors change as symptoms progress and indicated a desire for more long-term support:

“Having a 6-week program will be great but I think to some degree having like a follow up too cause things will change in 6 months, things will change in a year.” (Partner, D2)

Theme 2: Dyadic versus individual participation.

Couples indicated a preference to participate in psychosocial intervention sessions together. Given this preference, they emphasized the benefits of early intervention delivery to maximize the likelihood that persons with young-onset dementia can meaningfully participate:

“In the beginning it could be helpful to both people, but then there gets a point, where it simply is not going to matter. Right? So, I think then, that is why the middle part is the stuff that the caregiver really needs to know, it has no impact on the person with dementia…I mean (PT) and I are in this together.” (Partner, D12)

Couples described themselves as a “unified force” and it could be helpful to navigating young-onset dementia shortly after diagnosis (Partner, D5). They noted the importance of open communication for addressing shared and individual needs:

“I think you have to be transparent, I think there’s times she worries if I am telling her everything, explaining everything. I think the more transparent the better.” (Partner, D8)

However, some partners—primarily spouses who had partners in more advanced stages—said that having flexibility to share their individual experience without the presence of their partner would be helpful. They stated that they may want to individually discuss details of caregiving, transition of roles, or coping with their partners’ progressive symptoms:

“I could see caregivers being comfortable about talking about certain behaviors and so forth, but there were times that I needed to talk about a behavior, saying how do I cope with this. Where she would have been like, what? What are you talking about? So having some venue about where I could talk separately about some of those issues, may be helpful.” (Partner, D11)

Theme 3: Individualized delivery and home practice.

Couples suggested that dyadic psychosocial interventions should be individualized to meet couples’ unique stressors and needs. They emphasized that clinicians should work to understand the main challenges for each couple and tailor treatment accordingly:

“People have different needs and not everybody has exactly the same set of situations so it might be helpful to focus on some area and you may not need everything.” (Partner, D11)

“Your challenge is that you don’t have a one-size fits all.” (Person with dementia, D15)

Similarly, they also suggested that materials should be provided in multiple formats (e.g., print, web-based, and live practice) to best accommodate couples’ needs and preferences:

“Yeah a manual and the audio. That sounds like two good aspects.” (Partner, D21)

“Yeah so audio-visual is much more my preference…I do read, but it’s unlikely I would really engage with it.” (Person with dementia, D23)

They further noted that these materials would help facilitate home practice of skills, which they described as useful for learning and applying skills to cope with stressors:

“Some things she could go practice and do…that little bit of homework was helpful.” (Partner, D13)

Domain 4: Barriers and facilitators to participation in program

This domain includes two themes pertaining to barriers and facilitators related to motivations, emotions, logistics, and symptoms that may interfere with or promote participation.

Theme 1: Barriers to participation.

Couples identified several barriers to participating in a dyadic psychosocial intervention, including concerns about overburdening caregiving spouses with activities requiring substantial time and effort:

“I don’t want to put more of a burden on her with any of this. Now she responded quickly sure, but that’s my concern, like I certainly want to help, but I don’t want it by helping put more on her.” (Person with dementia, D23)

“I think this would help you out because right now, I am his voice. So, every single meeting, everything, so now I’m two. Okay. And then I still have a family and I still have a job…now you’re giving me more work.” (Partner, D14)

They also noted that they may have been initially “reluctant” or avoidant of participating:

“For me, I would probably initially kind of push back. That’s in me, I just sort of want to do it myself.” (Person with dementia, D1)

“You know at the time somebody said do you need a coping skills session or workshop or something I’m not sure how I would have reacted to um I might’ve said I’m coping just fine.” (Partner, D6)

Some partners also described the possibility of anxiety when discussing difficult topics together, especially if they were in “different places” in their acknowledgment of dementia:

“…What if one person wants to invest and the other doesn’t? How would that work, to encourage somebody to do something they don’t want to do or those kinds of people who are in really different places?” (Partner, D1)

Finally, couples were concerned about how young-onset dementia symptoms (e.g., difficulties with verbal communication, attention, and comprehension) could interfere with participation:

“I don’t know if I could pay attention to you for 45 minutes.” (Person with dementia, D9)

“Well the communication is a good barrier. I can’t talk as well.” (Person with dementia, D13)

Theme 2: Facilitators to participation.

Couples identified facilitators to participating in a psychosocial intervention. They noted that testimonials (i.e., descriptions of others’ treatment experiences) and tips from other couples with similar experiences may help motivate them to participate:

“That’s why being involved in a program like you’re suggesting so you’re not alone and alienated from the rest of society gives you psychologically a better situation and maybe some hope.” (Partner, D19) “Tips from other people who maybe are experiencing the same struggles. Things that have worked well for them, and that would be really helpful for me.” (Partner, D1)

Many couples emphasized the benefits of working with a counselor or clinician together, stating that having an “outside person” would help facilitate communication and skill-building:

“Discussions actually had a great way of making sure that [PT] was like attentive…there was much better communication when there were the three of us when there was an outside person that was when it was just [PT] and I.” (Partner, D6)

Couples stated that a virtual program and scheduling flexibility would increase accessibility and minimize facilitate participation (e.g., time and geographic distance):

“In the suburbs there was just not a lot of access and if you have to drive everywhere it would be better online.” (Partner, D12)

“Right now, I know PT works full-time and I work from home, so our schedules we can make them flexible.” (Partner, D21)

Discussion

Couples coping with young-onset dementia experience shared stressors and elevated levels of emotional distress (Wawrziczny et al., 2016). Given that young-onset dementia impacts persons living with it and their partners, both have expressed interest in couples-based psychosocial services. However, there are limited psychosocial resources available to meet the unique needs of persons living with young-onset dementia and their partners. To address this gap, we conducted dyadic interviews to understand couples’ perceptions of existing support services and preferences for psychosocial treatments. Our interview script was informed by our prior theoretically based and iteratively developed Recovering Together dyadic intervention and recent qualitative systematic review of couples’ experiences of stressors and coping strategies associated with young-onset dementia (Bannon et al., 2020; Vranceanu et al., 2020). Our findings will directly inform the development of a psychosocial program for couples. Using a hybrid deductive–inductive approach, we identified 12 total themes across four domains: (1) perceptions of available and lacking resources, (2) preferences for program content, (3) preferences for program format, and (4) barriers and facilitators to participation.

With regard to perceptions of available and lacking resources, couples valued psychosocial support, but emphasized that these resources are limited and not sufficient to address their needs. For example, although group support helped to normalize couples’ experiences, it also exacerbated anxiety when groups members were older and/or in more advanced stages of illness progression. Despite groups being available, recent large-scale research indicates that 70% of family members reported that they never attended a support group (Stamou La Fontaine, Gage et al., 2021). Therefore, these low rates coupled with our findings suggest that current support services are not adequate for this population. Researchers and clinicians are aware of the lack of psychosocial dyadic interventions (Millenaar et al., 2016; Stamou, La Fontaine, O’Malley et al., 2021), but there is little evidence for “what works” with regard to intervention delivery and design (Mayrhofer et al., 2018). Our findings help address this gap by providing nuanced information regarding what aspects of care couples perceive as lacking. Specifically, couples reported a need for: (1) time and coordination from providers, (2) more information on young-onset dementia, (3) age-appropriate resources, (4) logistical care planning support, and (5) family support.

To our knowledge, this is the first qualitative study to gather information on couples’ preferences for a psychosocial intervention specific to young-onset dementia. Regarding program content, couples endorsed that skills that focus on staying in the here and now, coping with loss and uncertainty, engaging in effective communication, managing progressive symptoms, and participating in meaningful activities would be useful. By interviewing partners together, our work provides novel skills that would benefit both partners such as coping with losses, coping with symptoms, and engaging in meaningful activities as a couple and individuals (e.g., maintain “personhood” for persons with young-onset dementia). Our findings have some overlap with Larochette et al. (2019) intervention (i.e., acceptance, role transition, and couple dynamics); however, their intervention is for spouses and therefore does not account for the psychosocial needs of persons with young-onset dementia (e.g., identity changes and grieving losses). Regarding program format, couples noted that a virtual, time-limited program that begins shortly after diagnosis was acceptable. Virtual formats (i.e., secure live video) are becoming increasingly popular ways to provide psychosocial care, especially in light of the COVID-19 pandemic. Virtual interventions exhibit strong feasibility, acceptability, and efficacy across a number of chronic illness populations, including those with neurogenerative diseases (Belleville et al., 2018; Hopwood et al., 2018; Vranceanu et al., 2020). These intervention help enhance accessibility and overcome barriers to participation (e.g., time and scheduling, transportation) (Park et al., 2020). In our study, couples also responded positively to the dyadic format. Dyadic interventions are a promising approach, given that they are cost-effective, efficient, and have been shown to prevent chronic emotional distress and enhance relationship dynamics for couples coping with a stroke, later-onset dementia, and cancer (e.g., Badr & Acitelli, 2017; Laver et al., 2017; Martire et al., 2010; Vranceanu et al., 2020). However, even in more developed literature on later-onset dementia, dyadic interventions are lacking a relational-focus as the care-partners’ needs tend to be prioritized and the relationship is secondary or overlooked (Bielsten & Hellstrom, 2019¨ ). Although couples in our study endorsed a need for dyadic interventions, some spouses expressed desire for space to discuss their individual experiences. Therefore, an optimal treatment approach would include a dyadic program focused on individual and relationship functioning, which could be supplemented with individual and/or spousal-specific support groups. We hope to develop a flexible, transdiagnostic program that can help address the common stressors associated with young-onset dementia (e.g., loss of work, role changes, and ongoing medical care) and promote positive psychosocial adjustment for a variety of couples. However, couples also emphasized that “everybody is different,” so it is important for clinicians to tailor treatment and skills to meet couples’ unique needs. Couples’ psychosocial experiences can differ by diagnosis, expected symptom progression, and individual sociocultural factors (Mioshi et al., 2013). Therefore, tailoring program content and encouraging couples to choose most relevant skills through a flexible modular format will be important. As an example, if couples report that cognitive symptoms are interfering with their ability to express and understand each other’s needs, then they could work with the clinician on communication skills. Alternatively, if couples with fewer resources are concerned about financial strain related to hospital or care costs, then they could work with the clinician on problem-solving strategies to address these stressors. We hope that delivering the intervention shortly after diagnosis would be applicable to both partners yet flexible enough to be adapted for varying subpopulations.

Future directions

Our qualitative findings can be used to directly inform the development of a skills-based dyadic program designed to prevent emotional distress in persons coping with a variety of young-onset dementias and their partners. Prior to intervention development, we will integrate several theoretical frameworks (i.e., family strength vulnerability model, dyadic longitudinal model, and resiliency framework) to inform our proposed conceptual model. Our goal is to develop a virtual, dyadic psychosocial program for these couples and then test for feasibility, acceptability, and efficacy in future iterative clinical trials. Our current findings provide valuable information about potential intervention content and format as well as ways to promote couples’ participation. Couples reported the following potential barriers to participation: concerns of overburdening spouses, symptoms interfering with treatment, initial resistance to psychosocial support, and concerns discussing topics together. Below we describe ways in which psychosocial programs can seek to overcome these barriers and promote treatment engagement.

Couples preferred a virtual, dyadic program that begins shortly after diagnosis. Given the accessibility and flexibility of a virtual format, this would help overcome concerns related to overburdening spouses. Engaging in care shortly after diagnosis would help ensure that both partners can participate, especially given that the symptoms of persons with young-onset dementia could interfere with treatment. Consistent with these findings, Stamou, La Fontaine, O’Malley et al., 2021 reported that flexibility and collaboration are important aspects of care to promote perceived control, accessibility, and participation. Our findings suggested that the following skills and/or topics may be helpful to address: mindfulness, acceptance, grief work, dialectics, interpersonal effectiveness skills, healthy lifestyle behaviors, problem-solving, values work/ commitment to action, and/or self-efficacy training (Hayes et al., 2012; Linehan, 2015; Vranceanu et al., 2020). Because couples endorsed that they may have initial resistance to treatment, it may be important to normalize stressors, emphasize the preventative nature of psychosocial support, and establish rapport with couples prior to study involvement (e.g., direct referrals from medical team). For couples who are concerned about discussing certain topics together, it is possible that skills would help them learn how to regulate emotions and communicate about difficult topics in effective ways. Further, programs that begin shortly after diagnosis may be optimal as couples are likely coping with similar stressors. If couples want to continue in psychosocial services throughout the disease, referrals to long-term individual treatment and/or support groups may be beneficial.

Strengths and limitations

This study has several strengths. First, we involved persons living with young-onset dementia and their partners in discussions about treatment preferences, which provides direct, rich, and nuanced information as to how the program content and format can be modified to overcome barriers and enhance engagement. Next, our interview script was informed by young-onset dementia qualitative research, psychosocial interventions for dementia, expert feedback from our multidisciplinary team, and our theoretically based and iteratively developed dyadic intervention (Bannon et al., 2020; Vranceanu et al., 2020). Our hybrid deductive–inductive approach helped us gather feedback on specific aspects of the program and also allowed for themes to emerge from the data, which can enhance program applicability and tailoring. Third, we conducted dyadic interviews, which provide valuable information regarding interpersonal dynamics and are an efficient and cost-effective approach to data collection. Dyadic interviews offer more information than two individual perspectives alone, given that interactions can stimulate ideas between partners (Eisikovits & Koren, 2010).

There are also important limitations to note. First, the sample was limited with regard to race/ethnicity and socioeconomic status (predominantly white and well-educated couples participated). Therefore, additional research on more diverse samples may help to inform how interventions can be adapted to specific subpopulations. Targeted recruitment and working with medical teams to identify couples who may benefit from services may help to enhance sociocultural diversity (Nápoles & Chadiha, 2011). Second, we interviewed couples at a single time point and most persons with young-onset dementia had been diagnosed within the past year and were thus able to meaningfully participate. As such, these interviews informed the development of a dyadic interventions early after diagnoses, but future work is needed to understand how couples’ needs change across time, especially as symptoms worsen. Third, because we interviewed couples together, they may have influenced each other’s responses and the unique experience of each person may not have been fully captured. In fact, many couples used “we” language and/or built on each other’s responses, so interventions that are geared toward individuals should gather additional information. Fourth, all couples interviewed reported good relationships with their partners. While this was not part of our inclusion criteria, it is important to mention because couples with relationship challenges prior to the diagnoses may have different needs. Finally, while our hybrid deductive–inductive approach can be conceptualized as a strength, our interview questions were informed by our prior work, which may have influenced findings related to the preferred program content and format. However, we tried to account for this by keeping questions open-ended and allowing for novel findings to emerge from the data.

Conclusion

This study is a first step in developing a feasible, acceptable, and person-centered intervention that seeks to prevent emotional distress in persons with young-onset dementia and their partners. We conducted qualitative interviews with this high-risk and underserved population to understand couples’ lived experiences and preferences for psychosocial support. We gathered detailed information on how to develop a program that would be clinically relevant for couples coping with young-onset dementia. Findings revealed that a virtual, dyadic intervention delivered shortly after diagnosis that helps couples cope with difficult emotions, communicate effectively, and live in line with values would be useful. Randomized controlled trials of dyadic interventions for young-onset dementia are needed to prevent negative psychosocial sequalae and promote adaptive adjustment in couples.

Biographies

Victoria A Grunberg is a clinical psychology fellow in the Integrated Brain Health Clinical and Research Program at Massachusetts General Hospital/Harvard Medical School. Her research focuses on promoting family adjustment to acute and chronic illnesses through integrated and technology-enhanced programming, especially among perinatal, neonatal, and neurological populations.

Sarah M Bannon is a clinical psychology fellow in the Integrated Brain Health Clinical and Research Program at Massachusetts General Hospital/Harvard Medical School. Her research focuses on integrating dyadic, interpersonal concepts, and family systems approaches into the study and treatment of patients and their families to promote resiliency early after the onset of neurological conditions (e.g., traumatic brain injury, dementia, stroke).

Mira Reichman is a Clinical Research Coordinator in the Integrated Brain Health Clinical and Research Program at Massachusetts General Hospital/Harvard Medical School. She is interested in psychosocial intervention development to promote resilience in persons living with chronic illness as well as qualitative methodology to inform intervention development and implementation.

Paula J Popok is a Clinical Research Coordinator in the Integrated Brain Health Clinical and Research Program at Massachusetts General Hospital/Harvard Medical School. Her research interests are within health psychology, both in integrating psychosocial care into medical settings and utilizing a biopsychosocial framework to explore risk and protective factors to improve health outcomes for patients facing a serious illness.

Ana-Maria Vranceanu is a clinical health psychologist, Director of the Integrated Brain Health Clinical and Research Program at the Massachusetts General Hospital, and Associate Professor of Psychology at Harvard Medical School. Her research focuses on the development, optimization, and rigorous testing of mind-body and lifestyle interventions for medical patients and their families.