A qualitative meta-synthesis of common and unique preferences for supportive services among persons with young onset dementia and their caregivers

Abstract

Background and Objectives

Young onset dementias (young onset dementia) produce a myriad of stressors for persons with young onset dementia and their caregivers, yet there is a critical shortage of supportive services that address their needs. To develop such services, it is necessary to first comprehensively understand persons’ with young onset dementia and their caregivers’ service preferences. Therefore, we conducted a meta-synthesis to integrate and summarize qualitative data on persons’ with young onset dementia and caregivers’ preferences for supportive services for young onset dementia, defined as support provided by medical providers, psychosocial interventions, and any other resources/services provided to promote positive adjustment in persons with young onset dementia and their caregivers.

Research Design and Methods

We searched five electronic databases for qualitative articles from inception to January 2020. We extracted and synthesized data from eligible articles using thematic analysis. After removal of duplicates, we screened 219 articles identified through database and hand searches.

Findings

Forty-three studies met our inclusion criteria. We extracted findings from these 43 studies on preferences within three a priori defined domains: 1) general characteristics of supportive services, 2) format and modality of supportive services, and 3) content for supportive services. Persons with young onset dementia and caregivers predominantly expressed common preferences, with some unique preferences based on their specific roles within the partnership.

Discussion and Implications

Persons with young onset dementia and their caregivers endorsed largely overlapping preferences, including having direct contact with providers and the ability to participate together in programs that have content and skills relevant to their specific needs and challenges. Findings can directly inform the format, content, and procedures of supportive services for persons with young onset dementia and their caregivers.

Keywords

caregiving dyads young onset dementia psychosocial interventions systematic review meta-synthesis supportive services

Introduction

Young onset dementias, such as Alzheimer’s disease, frontotemporal lobar degeneration, and Lewy body disease, are progressive illnesses without any known cure (Ducharme & Dickerson, 2015). They occur during an active life stage (typically ages 45–64) when individuals are often working, caring for other family members, and in otherwise good health. This early onset of atypical dementia symptoms (e.g., behavioral and cognitive changes) is often confusing and disruptive to the daily life of persons with young onset dementia and their loved ones. Receiving a diagnosis of young onset dementia is therefore a life-altering event for both persons with young onset dementia and their informal caregivers (e.g., spouse, partner, and child), given the uncertainty regarding diagnosis and prognosis and lack of cure or impactful treatments (Spreadbury & Kipps, 2019b).

Systematic reviews indicate high rates of clinically elevated emotional distress (e.g., depression and anxiety) (Spreadbury & Kipps, 2019a) for both persons with young onset dementia and caregivers, which can negatively impact their shared communication, relationship quality, and illness management (Kilty et al., 2019; Millenaar et al. 2016). These rates are not surprising given the difficult emotions (e.g., sadness, anger, and grief) and substantial stressors (e.g., loss of employment, increased caregiving, and change in roles) that accompany young onset dementias (Bannon et al., 2020; Spreadbury & Kipps, 2019a, 2019b; Stamou et al., 2020). However, both persons with young onset dementia and caregivers report dissatisfaction with the availability and fit of existing supportive services, defined as encompassing support provided by medical providers, psychosocial interventions, and any other resources/services provided to promote positive adjustment in persons with young onset dementia and their caregivers (Bannon et al., 2020). Previous systematic reviews also highlight the need for specialized, age-appropriate, and individually tailored psychosocial resources for persons with young onset dementia and their caregivers (Beattie et al., 2002; Sansoni et al., 2016). Yet, their preferences for such services remain unknown, and it is unclear whether persons with young onset dementia and caregivers report predominantly common (i.e., expressed by both persons with young onset dementia and caregivers) or unique (i.e., specific to persons with young onset dementia or caregivers) preferences in terms of general characteristics of their supportive services, format (e.g., in person or over live video) and modality (e.g., participating together or separately), as well as the content or skills viewed as most useful and relevant for services to include.

Prior systematic reviews have documented the importance of mitigating persons’ with young onset dementia and caregivers’ emotional distress through tailored supportive services (Bannon et al., 2020; Spreadbury & Kipps, 2019a, 2019b). Despite this recognition, there is no synthesized information available to guide their development. Qualitative research has the ability to provide insights about persons’ with young onset dementia and caregivers’ subjective experiences (Spreadbury & Kipps, 2019b) and is well-positioned to characterize their service preferences. An in-depth review of the preferences of persons with young onset dementia and their caregivers can help inform the development of tailored services and clinical care. Thus, in the present study, we conducted a meta-synthesis of the qualitative literature on supportive service preferences of persons with young onset dementia and their caregivers. Our long-term goal is to use this information to develop novel resources that meet the common and unique needs of persons with young onset dementia and their caregivers.

Method

Aim

We sought to identify and synthesize qualitative studies concerning persons’ with young onset dementia and caregivers’ preferences for supportive services within the following domains: 1) general characteristics of supportive services, 2) format and modality of supportive services, and 3) desired content of supportive services. Our larger goal was to inform resource development and clinical care for young onset dementia.

Search strategy and screening

Our meta-synthesis conformed to PRISMA guidelines (Page et al., 2021) and was registered prospectively on PROSPERO (CRD42020164802). Of note, database searches, article screening, quality appraisal, and data extraction were conducted simultaneously with our previously published meta-synthesis describing psychosocial stressors and coping strategies among persons with young onset dementia and informal caregivers (Bannon et al., 2020). Below we summarize key aspects of the methodology and those that were unique to the aims and scope of the present meta-synthesis.

We searched five electronic databases (PubMed, PsychINFO, CINAHL, MEDLINE, and Scopus) from inception to January 2020. Our search strategy comprised three key concepts: qualitative research, young onset dementia diagnosis, and persons’ with young onset dementia or caregivers’ experiences (Table 1). To select articles, we used a three-stage screening approach that included 1) screening titles for relevance, 2) applying inclusion and exclusion criteria to abstracts and full-text articles, and 3) discussing article inclusion as a team where disagreement occurred between two screeners.

Table 1.

Database Search Terms.

Search terms used to locate original articles relating to qualitative studies on the psychosocial intervention and service preferences reported by persons with young onset dementia and their informal caregivers*MeSH terms are italicized
Condition	Young onset dementia OR Early onset dementia OR Young-onset dementia OR Early-onset dementia AND
Method of research	Qualitative OR phenomenological research OR grounded theory OR focus group OR interview OR narrative OR experiences OR needs OR preferences AND
Population	Patients OR caregivers OR caregiver OR family members OR informal caregiver OR spouse OR spousal caregiver OR adult children OR children OR partner OR partners OR family caregiver OR carer OR care-partner OR care needs

We combined key words and Medical Subject Headings within each concept using the “OR” operator and combined the three concepts using the “AND” operator. We downloaded the search results from the five databases, compiled results, and removed duplicates. This database search yielded 164 articles, and hand searching (i.e., forward and backward citation tracking using Google Scholar) yielded 55 additional articles. One reviewer (MR) screened the titles of studies for relevance prior to abstract screening. Two independent reviewers then screened the remaining 159 article abstracts based on inclusion and exclusion criteria (Table 2). In the final stage of screening, two independent reviewers applied inclusion and exclusion criteria to full-text articles (74 articles). At both abstract and full-text screening stages, uncertainty or disagreement among reviewers was resolved through discussion with a third reviewer (SB).

Table 2.

Inclusion and Exclusion Criteria.

Inclusion criteria	Exclusion criteria
1. Article is written in English 2. Published in a peer-reviewed academic journal 3. Concerns original research and primary data collection 4. Used any type of qualitative methods for data collection or qualitative analysis of data (including mixed-methods) 5. Concerns patients or informal caregivers to patients with a diagnosis of young onset dementia (patients aged 65 and under) 6. Relevant to patients’ and/or caregivers’ experiences, needs, and/or preferences for psychosocial support resources in the post-diagnosis period 7. Article published during or after year 2010	1. Article does not concern primary data collection (e.g., opinion article or literature review) 2. Used quantitative methodology only for data collection and analysis 3. Concerns patients or informal caregivers to patients with a diagnosis of later-onset dementia (patients aged 65 and older) or a non-young onset dementia diagnosis 4. Not relevant to patients’ and/or caregivers’ experiences, needs, and/or preferences for psychosocial support resources in the post-diagnosis period

Inclusion criteria

Exclusion criteria

1. Article is written in English
2. Published in a peer-reviewed academic journal
3. Concerns original research and primary data collection
4. Used any type of qualitative methods for data collection or qualitative analysis of data (including mixed-methods)
5. Concerns patients or informal caregivers to patients with a diagnosis of young onset dementia (patients aged 65 and under)
6. Relevant to patients’ and/or caregivers’ experiences, needs, and/or preferences for psychosocial support resources in the post-diagnosis period
7. Article published during or after year 2010

1. Article does not concern primary data collection (e.g., opinion article or literature review)
2. Used quantitative methodology only for data collection and analysis
3. Concerns patients or informal caregivers to patients with a diagnosis of later-onset dementia (patients aged 65 and older) or a non-young onset dementia diagnosis
4. Not relevant to patients’ and/or caregivers’ experiences, needs, and/or preferences for psychosocial support resources in the post-diagnosis period

Of note, very few articles directly addressed persons’ with young onset dementia or caregivers’ preferences for supportive services (i.e., concerned specific proposed or implemented services). Therefore, in addition to including studies in this meta-synthesis that evaluate specific interventions or services (e.g., assistive technology interventions and physical activity interventions), we include articles that describe experiences after young onset dementia more generally, yet include some mention of experience with supportive services or preferences for supportive services. Our search strategy was intentionally inclusive with respect to relevance to the topic of supportive service preferences, including all articles that yielded at least one relevant insight to the topic.

Quality appraisal

To assess the methodological and reporting quality of qualitative studies, we used the 10-item Critical Appraisal Skills Program (CASP) (Critical Skills Appraisal Programme, 2018). The CASP encompasses ten criteria: 1) clarity and relevance of objective and aims, 2) appropriateness of qualitative methodology, 3) study design, 4) recruitment strategy, 5) data collection, 6) researcher reflexivity, 7) ethical considerations, 8) data analysis, 9) clarity of findings, and 10) value of the research. Criteria are rated on a scale of Yes (3 points), Can’t Tell (2 points), or No (1 point), resulting in overall scores that range from 30 to 10. Two independent reviewers rated the articles that met inclusion criteria. The broader team then discussed all discrepancies until consensus was reached. The articles included in the present review are overall of good quality (M = 25.75; range = 19–30). The criteria most often scored as poor quality among included articles were 4) recruitment strategy and 6) researcher reflexivity. Table 3 displays the overall distribution of quality ratings for all evaluated criteria.

Table 3.

CASP Rating of Included Studies.

Criteria	Met criteria (3)	Somewhat met criteria (2)	Did not meet criteria (1)
1. Was there a clear statement of the aims of the research?	37	5	1
2. Is a qualitative methodology appropriate?	43	0	0
3. Was the research design appropriate to address the aims of the research?	29	13	1
4. Was the recruitment strategy appropriate to the aims of the research?	15	20	8
5. Was the data collected in a way that addressed the research issue?	29	13	1
6. Has the relationship between researcher and participants been adequately considered?	4	11	28
7. Have ethical issues been taken into consideration?	29	12	2
8. Was the data analysis sufficiently rigorous?	33	6	4
9. Is there a clear statement of findings?	37	6	0
10. How valuable is the research?	40	2	1

Data extraction process

Two members of the study team independently read the full text of every article included in the meta-synthesis and extracted findings (i.e., supportive service preferences as relevant for persons with young onset dementia or caregivers) within a priori established domains of interest: 1) general characteristics of supportive services, 2) format and delivery modality of supportive services, and 3) desired content for supportive services. This structure for data extraction helped us identify findings relevant to preferences for supportive services from studies that concerned various types of interventions (e.g., community engagement programs and assistive technology interventions) as well as the broader literature of the experiences of persons with young onset dementia and their caregivers. The two reviewers discussed any differences that emerged among extracted findings and resolved disagreements.

Data synthesis

Our approach to data analysis utilized the meta-synthesis and thematic analysis analytical frameworks, which allowed us to integrate findings across studies to identify themes that represent novel interpretations of the results (Walsh & Downe, 2005). We organized findings within the domains of interest that structured our data extraction process and identified themes within each domain to describe findings. The authorship team iteratively revised the list of themes to combine similar ideas, reduce redundancies, and promote concision without loss of specificity.

Findings

Characteristics of studies

Figure 1 presents a PRISMA flow chart of the study search and selection process. Our meta-synthesis included 43 articles after the full-text inclusion screen. Supplemental Table 1 displays the participant and study characteristics of all articles included in our review. Included studies were conducted in a number of countries, including the United Kingdom (N = 15), Norway (N = 9), multiple European countries (N = 5), France (N = 4), Canada (N = 4), Australia (N = 4), United States (N = 2), and South America (N = 3). The mean sample size across studies was 27.6 (SD = 42.3, range = 1–233). Methods of data collection predominantly included interviews of either persons with young onset dementia (N = 13) or primary informal caregivers (N = 27). Few (N = 2) studies included dyads of persons with young onset dementia and caregivers interviewed together. In addition, some studies included individual interviews of other individuals (i.e., other family members and professional care providers for persons with young onset dementia) (N = 12) or focus groups (N = 7) that including a combination of persons with young onset dementia, caregivers, other family members, and professional care providers for persons with young onset dementia. A minority of included articles (N = 12) directly focused on specific supportive services, which included evaluations of community engagement and support programs (N = 5), assistive technology interventions for everyday living (N = 3), dementia care service models (N = 2), and individual education or coping skills interventions for caregivers (N = 2).

Figure 1.

PRISMA chart.

To analyze qualitative data, studies primarily used thematic analysis (N = 19), interpretative phenomenological analysis (IPA) (N = 8), or grounded theory (N = 5), with the remainder adopting a variety of different approaches (see Supplemental Table 1). Approximately half (47%) of the studies reported on time elapsed since young onset dementia diagnosis for participants. Out of these studies (N = 20), 75% reported that individuals were diagnosed on average more than 1 year before study participation. Two studies included both individuals with young onset dementia and later-onset dementia (>65) yet presented findings separately for each group. In addition, some studies focused on specific subtypes of young onset dementia, such as FTD (N = 17) and posterior cortical atrophy (N = 3). Caregivers included spouses (N = 16), children (N = 7), and other family members (N = 12). Descriptive characteristics of all included studies can be found in Supplemental Table 1.

Synthesized findings

We synthesized qualitative findings (i.e., supportive service preferences as relevant for persons with young onset dementia and caregivers) within three a priori defined domains: 1) general characteristics of supportive services, 2) format of treatment and delivery modality of supportive services, and 3) desired content of supportive services. Within each of these domains, we captured persons’ with young onset dementia and caregivers’ common and unique preferences.

Table 4 presents the themes identified within each domain along with the supportive literature for each finding. Within each domain below, we first present themes that are common to persons with young onset dementia and caregivers and then present themes that are unique to their individual perspectives.

Table 4.

Synthesized Findings Across Study Domains.

Domain	Themes	Supportive literature [persons with young onset dementia]	Supportive literature [caregivers]
1. General characteristics of supportive services	1. Appropriate to dyad’s age and life stage; specific to young onset dementia subtype	[Bakker et al. (2010); Carone et al. (2016); Cations et al. (2017); Giebel et al. (2020); Harding et al. (2018); Hutchinson et al. (2020); Johannessen & Moller, 2013; Johannessen et al. (2016); Kilty et al. (2019); Kinney et al. (2011); Lockeridge and Simpson (2013); Sakamoto et al. (2017); Oyebode et al. (2013); Pipon-Young (2012); Rabanal et al. (2018); Stamou et al. (2020); Thorsen et al. (2020)]	[Carone et al. (2016); Dourado et al. (2018); Flynn and Mulcahy (2013); Hutchinson et al. (2016); Hutchinson et al. (2020); Johannessen et al. (2016); Johannessen et al. (2017); Lockeridge and Simpson (2013); Kilty et al. (2019); Millenaar et al. (2014); Millenaar et al. (2018); Stamou et al. (2020); Wawrziczny et al. (2017a)]
	2. Inclusive and accessible; readily available in timely fashion	[Kilty et al. (2019); Kinney et al. (2011); Mayrhofer et al. (2020); Rabanal et al. (2018); Stamou et al. (2020)]	[Aslett et al. (2019); Bakker et al. (2010); Cations et al. (2017); Ducharme et al. (2014); García-Toro et al. (2020); Hutchinson et al. (2016); Lockeridge and Simpson (2013); Mayrhofer et al. (2020); Stamou et al. (2020); Van Rickstal et al. (2019)]
	3. Consistently available over time; relevant to needs over course of illness progression	[Giebel et al. (2020); Johannessen et al. (2016); Mayrhofer et al. (2020); Stamou et al. (2020)]	[Bakker et al. (2010); Johannessen et al. (2016); Johannessen et al. (2017); Mayrhofer et al. (2020); Van Rickstal et al. (2019)]
	4. Flexible and individualized; tailored to dyad’s specific and changing needs and situation	[Arntzen et al. (2016); Bakker et al. (2010); Cations et al. (2017); Johannessen et al. (2016); Kilty et al. (2019); Lockeridge and Simpson (2013); Oyebode et al. (2013); Rabanal et al. (2018); Rostad et al. (2013)]	[Carone et al. (2016); Cations et al. (2017); Johannessen et al. (2016); Johannessen et al. (2017); Kilty et al. (2019); Larochette et al. (2019); Millenaar et al. (2014); Millenaar et al. (2018); Wawrziczny et al. (2017a); Wawrziczny et al. (2017b)]
	5. Provide “gentle support” and allow time for processing diagnosis and accepting progression of symptoms before provision of information or initiation of intervention	Johannessen & Moller, 2013; Rabanal et al. (2018)]	Metcalfe et al. (2019)
	6. Treat persons with young onset dementia with respect and as the expert with autonomy for decision making [for persons with young onset dementia]	[Johannessen et al. (2016); Rostad et al. (2013)] [Aslett et al. (2019); Johannessen & Moller, 2013]
2. Format and delivery modality of support services	1. Direct, interactive contact either in person or over live video with providers to develop relationships to navigate young onset dementia	[Thorsen et al. (2020)]	[Metcalfe et al. (2019); Nichols et al. (2013)]
	2. Option to attend and participate together as dyad to support both partners’ needs	[Carone et al. (2016); Ducharme et al. (2013); Johannessen et al. (2017); Jentoft et al. (2014)] [Stamou et al. (2020)]	[Carone et al. (2016); Ducharme et al. (2013); Jentoft et al. (2014); Johannessen et al. (2017)] [Stamou et al. (2020)]
	3. Involvement of caregivers to assist with persons with young onset dementia participation, engagement, and at-home skills practice [for persons with young onset dementia]	[Arntzen et al. (2016); Hewitt et al. (2013)]	N/A
	4. Live video or other virtual support to minimize burdens in access [for caregivers]	N/A	[Lockeridge and Simpson (2013); Metcalfe et al. (2019); Nichols et al. (2013)]
	5. Flexible timing (e.g., evenings and weekends) of support to reduce burden [for caregivers]	N/A	[Arntzen et al. (2016); Johannessen et al. (2016); Metcalfe et al. (2019); Millenaar et al. (2014); Wawrziczny et al. (2017b)]
3. Content for support services	1. Education to promote an understanding of the diagnosis and what to expect in the future (i.e., symptom progression, and prognosis)	[Harding et al. (2018); Hutchinson et al. (2020); Stamou et al. (2020); Van Rickstal et al. (2019)]	[Bakker et al. (2010); Flynn and Mulcahy (2013); Harding et al. (2018); Hutchinson et al. (2016); Lockeridge and Simpson (2013); Millenaar et al. (2018); Nichols et al. (2013); Stamou et al. (2020); Svanberg et al. (2010); Van Rickstal et al. (2019); Wawrziczny et al. (2017b)]
	2. Individualized practical support for logistical challenges and planning for the future (e.g., retirement, financial, legal, and end-of-life care)	[Hutchinson et al. (2020); Sakamoto et al. (2017); Ritchie et al. (2018); Stamou et al. (2020); Van Rickstal et al. (2019)]	[Cations et al. (2017); Ducharme et al. (2013); Ducharme et al. (2014); García-Toro et al. (2020); Hutchinson et al. (2016); Johannessen et al. (2017); Kimura et al. (2015); Lockeridge and Simpson (2013); Mayrhofer et al. (2020); Stamou et al. (2020); Van Rickstal et al. (2019); Wawrziczny et al. (2017b)]
	3. Skills for communicating openly about thoughts, feelings, and experiences after young onset dementia symptom onset	[Hutchinson et al. (2020); Rabanal et al. (2018); Robertson and Evans (2015); Pipon-Young (2012); Stamou et al. (2020) ]	[Hutchinson et al. (2016); Hutchinson et al. (2020); Larochette et al. (2019); Nichols et al. (2013); Wawrziczny et al. (2017b)]
	4. Skills for communicating effectively (within dyad and with friends/family), including those needed to overcome disruptions in communication due to young onset dementia	[Hutchinson et al. (2020)][Stamou et al. (2020)]	[Hutchinson et al. (2016); Hutchinson et al. (2020); Larochette et al. (2019); Nichols et al. (2013); Stamou et al. (2020)]
	5. Skills to navigate changes in family roles and responsibilities, including those involving other family members (e.g., children, extended family)	[Arntzen et al. (2016); Ducharme et al. (2013)] [Hutchinson et al. (2020); [Stamou et al. (2020)]	[Aslett et al. (2019); García-Toro et al. (2020); Hutchinson et al. (2016); Hutchinson et al. (2020); Larochette et al. (2019); Nichols et al. (2013); Svanberg et al. (2010)][Arntzen et al. (2016); Ducharme et al. (2013); Hutchinson et al. (2020)]
	6. Skills to reduce social isolation and meaningfully engage social support	[Carone et al. (2016); Cations et al. (2017); Hewitt et al. (2013); Hutchinson et al. (2020); Johannessen & Moller, 2013; Kinney et al. (2011); Mayrhofer et al. (2020); Rabanal et al. (2018); Stamou et al. (2020) ]	[Cations et al. (2017); Dourado et al. (2018); Hutchinson et al. (2016); Hutchinson et al. (2020); Kilty et al. (2019); Mayrhofer et al. (2020); Stamou et al. (2020); Wawrziczny et al. (2017b)]
	7. Skills for managing persons with young onset dementia symptoms while promoting autonomy [for persons with young onset dementia]	[Arntzen et al. (2016); Ducharme et al. (2014); Hewitt et al. (2013); Holthe et al. (2018); Rabanal et al. (2018); Stamou et al. (2020); Wawrziczny et al. (2017b)] [Johannessen & Moller, 2013; Johannessen et al. (2016)]	N/A
	8. Support in identifying and pursuing opportunities to engage in rewarding or positive activities (e.g., learn new skills, stay cognitively challenged, stay physically active, and meaningfully help others) [for persons with young onset dementia]	[Cations et al. (2017); Hewitt et al. (2013); Holthe et al. (2018); Kimura et al. (2015); Kinney et al. (2011); Robertson and Evans (2015); Stamou et al. (2020); Wawrziczny et al. (2017b)]	N/A
	9. Support adjusting to caregiving role and responsibilities [for caregivers]	N/A	[Arntzen et al. (2016); Bakker et al. (2010); Hutchinson et al. (2016); Hutchinson et al. (2020); Kilty et al. (2019); Kimura et al. (2015); Larochette et al. (2019); Metcalfe et al. (2019); Millenaar et al. (2014); Millenaar et al. (2018); Wawrziczny et al. (2017b)]
	10. Skills focusing on identifying individual needs and prioritize self-care [for caregivers]	N/A	[Arntzen et al. (2016); Bakker et al. (2010); Cations et al. (2017); Ducharme et al. (2013); Ducharme et al. (2014); Dourado et al. (2018); Flynn and Mulcahy (2013); Hutchinson et al. (2020); Johannessen et al. (2016); Johannessen et al. (2017); Kimura et al. (2015); Kinney et al. (2011); Larochette et al. (2019); Metcalfe et al. (2019); Millenaar et al. (2014); Millenaar et al. (2018); Svanberg et al. (2010); Wawrziczny et al. (2017b)]
	11. Skills to reduce the emotional toll of caregiving (e.g., acceptance, gratitude, meaning making, cultivating positivity) [for caregivers]	N/A	[Larochette et al. (2019); Millenaar et al. (2014); Svanberg et al. (2010)]

Domain 1: general characteristics of supportive services

This domain encompasses five common themes that address the general characteristics of supportive services that persons with young onset dementia and caregivers believed were helpful for promoting their positive adjustment to young onset dementia. Both persons with young onset dementia and caregivers had preferences for supportive services that are (1) appropriate to their age and life stage and specific to young onset dementia subtype; (2) inclusive, accessible, and readily available; (3) consistently available and relevant to the stage in young onset dementia illness progression; (4) flexible and individualized, tailored to their shared needs and challenges; and (5) allowing time for persons with young onset dementia and caregivers to process the diagnosis at their own pace. Persons with young onset dementia endorsed a unique preference for (6) service providers to indicate a respect for their autonomy by treating them as experts on their own symptoms and as active participants in their healthcare decisions. We briefly describe themes with relevant evidence below.

Both persons with young onset dementia and caregivers strongly preferred age-appropriate resources, and requested disease-specific guidance so that they could best navigate current financial, personal, medical, and practical challenges and plan for the future (Arntzen et al., 2016; Bakker et al., 2010; Cations et al., 2017; Johannessen et al., 2016; Lockeridge & Simpson, 2013). Both persons with young onset dementia and caregivers indicated preferences for respectful, knowledgeable, and trustworthy service providers who provided relevant information about young onset dementia diagnosis and prognosis (Bakker et al., 2010; Johannessen et al., 2016; Kinney et al., 2011; Millenaar et al., 2014; Stamou et al., 2020). They also described the benefits of accessible support and continuity of care throughout young onset dementia progression (Bakker et al., 2010; Giebel et al., 2020; Johannessen et al., 2016; Mayrhofer et al., 2020; Stamou et al., 2020). Persons with young onset dementia and caregivers described a preference for services that were appropriate for their stage in the young onset dementia illness progression and accounted for persons’ with young onset dementia current functioning (Carone et al., 2016; Dourado et al., 2018; Flynn & Mulcahy, 2013; Hutchinson et al., 2016) and individualized to their specific challenges (e.g., parenting in the context of young onset dementia for couples with children). They also both expressed a desire for “gentle support” in connection to the impact of the diagnosis and transition to care-partners, particularly before discussion of long-term issues like advanced care planning (Johannessen & Moller, 2013; Metcalfe et al., 2019; Nichols et al., 2013).

Domain 2: delivery format and modality of supportive services

This domain encompasses two common themes regarding preferences for the format and delivery modalities of supportive services. Both persons with young onset dementia and caregivers expressed preferences for resources that (1) meaningfully connect them to providers through in-person support or interactive live video and (2) give them the option to participate together to discuss both partners’ needs. Persons with young onset dementia specifically endorsed desire for (3) involvement of caregivers in their services, through active involvement in conversations regarding information about their diagnosis and how to best function as a team. Caregiver-specific preferences included (4) live video or other virtual support to minimize barriers in access and (5) flexible timing (e.g., evenings and weekends) to reduce burden.

Both persons with young onset dementia and caregivers expressed a desire for services that would allow them to develop networks to meaningfully engage with their providers and others impacted by young onset dementia (Metcalfe et al., 2019; Nichols et al., 2013; Thorsen et al., 2020). They also described the benefits of including an option to participate in services separately or together to discuss young onset dementia-related challenges (Carone et al., 2016; Ducharme et al., 2013; Johannessen et al., 2017; Jentoft et al., 2014). Persons with young onset dementia explained that participating in psychosocial services with their caregivers would help promote at-home practice of coping skills and lifestyle changes (Arntzen et al., 2016; Hewitt et al., 2013). Though caregivers indicated that in-person support was valuable, they found online formats for support groups and skills training to be helpful to overcome the barrier of travel for sessions (Lockeridge & Simpson, 2013; Metcalfe et al., 2019; Nichols et al., 2013). Given their need to navigate increased responsibilities and time commitments, caregivers also expressed desire for support and practical skills that were not burdensome and could be easily integrated into their changing daily schedules and routines (Arntzen et al., 2016; Johannessen et al., 2016; Metcalfe et al., 2019; Millenaar et al., 2014; Wawrziczny et al., 2017b).

Domain 3: desired content for supportive services

This domain encompasses six common themes that describe shared preferences among persons with young onset dementia and caregivers for the desired content discussed in supportive services. Both persons with young onset dementia and caregivers expressed desire for (1) education to promote an understanding of young onset dementia and what to expect in the future, (2) individualized practical support for logistical challenges, (3) skills for open communication about thoughts and feelings, (4) skills for communicating effectively in the context of worsening young onset dementia symptoms, (5) skills to navigate changes in family roles and responsibilities, and (6) skills to reduce social isolation and meaningfully engage in social support. We identified two unique themes for persons with young onset dementia: (7) skills for managing symptoms while preserving autonomy and (8) support identifying and pursuing opportunities to engage in rewarding or positive activities. In addition, we identified three unique themes for caregivers: (9) support adjusting to caregiver responsibilities, (10) skills to identify individual needs and prioritize self-care, and (11) skills to reduce the emotional impact of caregiving.

Persons with young onset dementia and caregivers both expressed interest in training to build skills related to having more open conversations about their individual experiences with young onset dementia (Hutchinson et al., 2016, 2020; Larochette et al., 2019; Nichols et al., 2013; Stamou et al., 2020). Specifically, they sought to learn strategies to more effectively express and understand each other’s needs in general and in the context of young onset dementia-related communication disruptions (Larochette et al., 2019; Stamou et al., 2020). Both persons with young onset dementia and caregivers also sought training in skills (e.g., collaborative problem-solving) to maintain the functional balance of roles and responsibilities within their couple or family unit (Arntzen et al., 2016; Aslett et al., 2019; Ducharme et al., 2013; García-Toro et al., 2020; Svanberg et al., 2010) and highlighted the benefits of participating in support-group activities with other persons with young onset dementia and caregivers to promote normalization, problem-solve common stressors, and cultivate a sense of belonging (Hewitt et al., 2013; Johannessen & Moller, 2013; Kinney et al., 2011; Mayrhofer et al., 2020; Rabanal et al., 2018).

Regarding unique themes, persons with young onset dementia desired practical strategies for managing their symptoms that were appropriate for their current level of functioning (Ducharme et al., 2013; Hewitt et al., 2013; Holthe et al., 2018; Johannessen & Moller, 2013; Rabanal et al., 2018) and to learn to cultivate new skills and engage in hobbies to promote their health and well-being (Cations et al., 2017; Hewitt et al., 2013; Holthe et al., 2018; Kimura et al., 2015; Robertson & Evans, 2015). Caregivers hoped to learn strategies to better manage persons’ with young onset dementia behavioral symptoms (Kilty et al., 2019; Kimura et al., 2015; Larochette et al., 2019; Millenaar et al., 2014; Wawrziczny et al., 2017b), navigate practical tasks (e.g., arranging care, navigating medical appointments, financial support, and advanced care options), and provide support without needing to excessively “monitor” persons with young onset dementia (García-Toro et al., 2020; Lockeridge & Simpson, 2013; Mayrhofer et al., 2020; Van Rickstal et al., 2019; Wawrziczny et al., 2017b). Caregivers also sought to learn to prioritize their own mental health and emotional or practical needs (Dourado et al., 2018; Flynn & Mulcahy, 2013; Johannessen et al., 2017; Larochette et al., 2019; Svanberg et al., 2010). Finally, caregivers highlighted the benefits of guided training and practice in positive coping skills to reduce the impact of daily stressors, manage difficult emotions associated with young onset dementia (e.g., sadness, anxiety, and grief), and learn to stay connected to persons with young onset dementia in the context of progressive symptoms (Larochette et al., 2019; Millenaar et al., 2014; Svanberg et al., 2010).

Discussion

Young onset dementia produces unique challenges relative to later-onset dementias, and persons living with young onset dementia and their caregivers report dissatisfaction with the availability and fit of existing supportive services. Yet, there is currently no integrated information available to direct the development of such resources (Bannon et al., 2020). Therefore, we conducted the first meta-synthesis to comprehensively characterize persons’ with young onset dementia and caregivers’ preferences for supportive services to address the challenges they experience after diagnosis. We generated a wealth of information on their common and unique perspectives regarding the 1) general characteristics of supportive services, 2) format and delivery modality of supportive services, and 3) desired content for supportive services.

Our review replicates and extends the scope of previous qualitative reviews of experiences with young onset dementia (Bannon et al., 2020; Spreadbury & Kipps, 2019a, 2019b) and service needs before and after diagnosis (Sansoni et al., 2016; Westera et al., 2016). Specifically, prior reviews described the individual preferences of persons with dementia and their caregivers in terms of the general characteristics and format of services and emphasized the need for adopting an individualized and person-centered approach to young onset dementia services that recognizes the diversity among diagnostic groups and individuals’ varying needs (Sansoni et al., 2016). In addition, they also acknowledge the need for timely provision of post-diagnostic services to promote adjustment and allow persons with young onset dementia and caregivers to engage in routines and meaningful activities (Sansoni et al., 2016; Westera et al., 2016). Our review is the first to comprehensively characterize the preferred content of services, and our findings can be used to directly inform services that promote positive adjustment for both partners after diagnosis. Our findings also parallel those observed in qualitative systematic reviews involving persons with older onset dementias and their caregivers, where both individuals expressed preferences for continuous support and counseling as well as services that they could participate in together to manage their individual distress and work to adjust to changes in their shared experiences (von Kutzleben, Schmid, Halek, Holle, & Bartholomeyczik, 2012; Wadham, Simpson, Rust, & Murray, 2016).

Our meta-synthesis revealed that only a small number of published studies (N = 11) pertained to persons’ with young onset dementia or caregivers’ preferences for specific proposed or implemented supportive services. Two studies pertained to individual interventions for caregivers, with only one assessing perspectives of a skill-based intervention (Larochette et al., 2019). Only two studies obtained preferences prospectively for the purpose of the development of dementia care service models for young onset dementia, and we failed to identify any studies discussing perceptions of individual interventions for persons with young onset dementia, dyadic interventions (i.e., involving persons with young onset dementia and caregivers simultaneously), or family-based approaches. By adopting a rigorous strategy for identifying articles (database and hand search) and including other studies that revealed insights related to service preferences, we were able to comprehensively extract findings that can guide future efforts in this area.

Across studies, we observed that preferences were predominantly common among persons with young onset dementia and caregivers. Specifically, regarding the general characteristics of supportive services and the preferred format and delivery modality of supportive services, both endorsed a strong preference for young onset dementia-specific services to participate in together early after diagnosis. Persons with young onset dementia and caregivers underscored the importance of meaningfully interacting with service providers and others in the young onset dementia community to develop relationships that would be maintained throughout the illness progression. They both emphasized the need for supportive services to be flexible and tailored to their specific needs and stage in the illness progression. Regarding the desired content of supportive services, common preferences included education on young onset dementia diagnosis and prognosis and tailored skills training to navigate practical challenges, communicate openly about young onset dementia-related challenges (e.g., difficult emotional experiences and changes in roles and responsibilities), and meaningfully engage social support.

While the majority of preferences were common, we identified important unique preferences for service providers to consider. Persons with young onset dementia described the importance of maintaining agency in their management of young onset dementia through their participation in supportive services with caregivers, with the goal of collaboratively preserving their continued autonomy and independent identities. In addition, caregivers described the importance of overcoming barriers to participating in supportive services, in light of their caregiving responsibilities and time constraints (e.g., offering live video or virtual support and flexible timing of delivery), and expressed a desire to learn how to prioritize self-care and minimize the emotional toll of caregiving. The common and unique preferences identified in our review highlight the benefits of offering services capable of being tailored to both persons’ with young onset dementia and caregivers’ shared and individual circumstances.

Limitations and future directions

Very few studies directly assessed the supportive service preferences of persons with young onset dementia and caregivers facing young onset dementia. Therefore, our meta-synthesis was limited by the available qualitative literature in this area. However, the preferences identified in our meta-synthesis are similar to those described in interventions for later-onset dementias (Moon & Adams, 2013), where experts have advocated for a movement beyond caregiver-focused supportive services to instead include persons with dementia and their caregivers simultaneously. Historically, these approaches have been difficult to implement due to delays in timely diagnosis, resulting in a missed “window of opportunity” to meaningfully involve persons with young onset dementia in their own supportive services and care (García-Toro et al., 2020; Mayrhofer et al., 2020; Metcalfe et al., 2019). While the articles included in this review were of overall good quality, we identified a number of methodological weaknesses of the available literature (e.g., considering and reporting on the relationship between researchers and participants). Future qualitative investigations of persons living with young onset dementia and their caregivers could be strengthened by considering and reporting on the appropriateness of study design, recruitment strategies, and data collection methodologies for addressing research aims as well as considering and reporting on the relationship between researchers and participants.

Recent advances in technology have enabled earlier and more confident diagnoses of young onset dementia (Mayrhofer et al., 2020), leading to new possibilities for supportive services. Future studies are needed that include both persons with young onset dementia and their caregivers and focus specifically on service preferences to facilitate the development of additional resources for young onset dementia, including studies characterizing (a) service preferences of dyads in the initial post-diagnosis period and across the young onset dementia illness continuum; (b) barriers and facilitators of use and meaningful engagement in supportive resources among persons with young onset dementia, caregivers, and dyads; (c) ways of adapting content and skills to meet the unique needs and considerations of young onset dementia; and (d) individual and dyadic factors that may contribute to the feasibility, acceptability, and utility of supportive services in young onset dementia. In addition, findings identified in our study may diverge from the experiences of more diverse groups of persons with young onset dementia and caregivers, particularly because samples in the included studies were predominantly recruited from Western countries and involved non-Hispanic White participants.

Conclusion

Our meta-synthesis is the first to comprehensively investigate the available literature concerning the supportive service preferences of persons with young onset dementia and caregivers. We observed that most preferences were common among persons with young onset dementia and caregivers, including desires for young onset dementia-specific services to participate in together early after diagnosis. Both persons with young onset dementia and caregivers also expressed interest in having direct, interactive contact with service providers and programs that are flexible and tailored to their specific needs and challenges in their stage of young onset dementia progression. We also report on unique preferences for persons with young onset dementia and caregivers to be taken into account in the development of services. Findings directly inform the development of supportive services for persons with young onset dementia and their caregivers.

Supplemental Material

sj-pdf-1-dem-10.1177_14713012211048118 – Supplemental Material for A qualitative meta-synthesis of common and unique preferences for supportive services among persons with young onset dementia and their caregivers

Supplemental Material, sj-pdf-1-dem-10.1177_14713012211048118 for A qualitative meta-synthesis of common and unique preferences for supportive services among persons with young onset dementia and their caregivers by Sarah M Bannon, Mira R Reichman, Katherine Wang, Simrit Uppal, Victoria A Grunberg and Ana-Maria Vranceanu in Dementia

Footnotes

Declaration of conflicting interests

A-MV reports serving on the Scientific Advisory Board for the Calm application outside of the submitted work. She also reports research support from NIH, NF-Midwest, NF-Texas, NF-Northeast, and royalties from Oxford University Press. All other authors declare no conflicts of interests.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by grants 5R21 NR017979 and 3R21 NR01797902-S1 from National Institute of Nursing Research and National Institute of Aging to Ana-Maria Vranceanu.

Ethical approval

No ethical approval was needed because data from previously published studies in which informed consent was obtained by primary investigators were retrieved and analyzed.

ORCID iDs

Katherine Wang

Ana-Maria Vranceanu

Supplemental material

Supplemental material for this article is available online.

Sarah M. Bannon is a clinical 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, and stroke).

Mira Reichman is 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.

Katherine E. Wang is Research Volunteer in the Integrated Brain Health Clinical and Research Program at Massachusetts General Hospital/Harvard Medical School and master’s student of bioethics at Harvard Medical School. She is interested in the mind-body connection and its implications for optimizing clinical care.

Simrit Uppal is Research Volunteer in the Integrated Brain Health Clinical and Research Program at Massachusetts General Hospital/Harvard Medical School. She is an undergraduate at Tufts University and is interested in clinical research that focuses on resiliency in persons with cognitive decline and young onset dementia.

Victoria A. Grunberg is a clinical fellow in the Integrated Brain Health Clinical and Research Program at Massachusetts General Hospital/Harvard Medical School. She is also a clinical psychology doctoral candidate at Drexel University, with concentrations in health psychology and neuropsychology. Her research focuses on promoting family adjustment to acute and chronic illnesses, especially among perinatal, neonatal, and neurological populations.

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.

References

Arntzen

Holthe

Jentoft

(2016). Tracing the successful incorporation of assistive technology into everyday life for younger people with dementia and family carers. Dementia, 15(4), 646–662. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301214532263

Aslett

H. J.

Huws

J. C.

Woods

R. T.

Kelly-Rhind

(2019). This is Killing me Inside”: The impact of having a parent with young-onset dementia. Dementia, 18(3), 1089–1107. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301217702977

Bakker

de Vugt

M. E.

Vernooij-Dassen

van Vliet

Verhey

F. R.

Koopmans

R. T.

(2010). Needs in early onset dementia: A qualitative case from the NeedYD study. American Journal of Alzheimer's Disease and Other Dementias, 25(8), 634–640. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1533317510385811

Bannon

Lester

E. G.

Gates

M. V.

McCurley

Lin

Rosand

Vranceanu

A. M.

(2020). Recovering together: Building resiliency in dyads of stroke patients and their caregivers at risk for chronic emotional distress; A feasibility study. Pilot and Feasibility Studies, 6(1), 75. https://dx-doi-org-s.web.bisu.edu.cn/10.1186/s40814-020-00615-z

Beattie

A. M.

Daker-White

Gilliard

Means

(2002). Younger people in dementia care: a review of service needs, service provision and models of good practice. Aging & Mental Health, 6(3), 205–212.

Carone

Tischler

Dening

(2016). Football and dementia: A qualitative investigation of a community based sports group for men with early onset dementia. Dementia, 15(6), 1358–1376. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301214560239

Cations

Withall

Horsfall

Denham

White

Trollor

Loy

Brodaty

Sachdev

Gonski

Demirkol

Cumming

R. G.

Draper

(2017). Why aren’t people with young onset dementia and their supporters using formal services? Results from the INSPIRED study. PLoS ONE, 12(7), e0180935. https://dx-doi-org-s.web.bisu.edu.cn/10.1371/journal.pone.0180935

Critical Skills Appraisal Programme . (2018). CASP qualitative checklist. https://casp-uk.net/wp content/uploads/2018/03/CASP-Qualitative-Checklist-2018_fillable_form.pdf

Dourado

M. C. N.

Laks

Kimura

N. R.

Baptista

M. a. T.

Barca

M. L.

Engedal

Tveit

Johannessen

(2018). Young-onset Alzheimer dementia: A comparison of Brazilian and Norwegian carers’ experiences and needs for assistance. International Journal of Geriatric Psychiatry, 33(6), 824–831. https://dx-doi-org-s.web.bisu.edu.cn/10.1002/gps.4717

10.

Ducharme

Dickerson

B. C.

(2015). The neuropsychiatric examination of the young-onset dementias. The Psychiatric Clinics of North America, 38(2), 249–264. https://dx-doi-org-s.web.bisu.edu.cn/10.1016/j.psc.2015.01.002

11.

Ducharme

Kergoat

M. J.

Antoine

Pasquier

Coulombe

(2013). The unique experience of spouses in early-onset dementia. American Journal of Alzheimer's Disease and Other Dementias, 28(6), 634–641. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1533317513494443

12.

Ducharme

Kergoat

M. J.

Coulombe

Lévesque

Antoine

Pasquier

(2014). Unmet support needs of early onset dementia family caregivers: A mixed-design study. BMC Nursing, 13(1), 49. https://dx-doi-org-s.web.bisu.edu.cn/10.1186/s12912-014-0049-3

13.

Flynn

Mulcahy

(2013). Early-onset dementia: The impact on family care-givers. British Journal of Community Nursing, 18(12), 598–606. https://dx-doi-org-s.web.bisu.edu.cn/10.12968/bjcn.2013.18.12.598

14.

García-Toro

Sánchez-Gómez

M. C.

Madrigal Zapata

Lopera

F. J.

(2020). “In the flesh”: Narratives of family caregivers at risk of early-onset familial Alzheimer’s disease. Dementia, 19(5), 1474–1491. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301218801501

15.

Giebel

Eastham

Cannon

Wilson

Pearson

(2020). Evaluating a young-onset dementia service from two sides of the coin: Staff and service user perspectives. BMC Health Services Research, 20(187), 121. https://dx-doi-org-s.web.bisu.edu.cn/10.1186/s12913-020-5027-8

16.

Harding

Sullivan

M. P.

Woodbridge

Yong

K. X. X.

McIntyre

Gilhooly

M. L.

Gilhooly

K. J.

Crutch

S. J.

(2018). “Because my brain isn’t as active as it should be, my eyes don’t always see”: A qualitative exploration of the stress process for those living with posterior cortical atrophy. BMJ Open, 8(2), e018663. https://dx-doi-org-s.web.bisu.edu.cn/10.1136/bmjopen-2017–018663

17.

Hewitt

Watts

Hussey

Power

Williams

(2013). Does a structured gardening programme improve well-being in young-onset dementia? A preliminary study. British Journal of Occupational Therapy, 76(8), 355–361. https://dx-doi-org-s.web.bisu.edu.cn/10.4276/0308022 13X13757040168270

18.

Holthe

Jentoft

Arntzen

Thorsen

(2018). Benefits and burdens: Family caregivers’ experiences of assistive technology (AT) in everyday life with persons with young onset dementia (young onset dementia). Disability and Rehabilitation. Disability and Rehabilitation. Assistive Technology, 13(8), 754–762. https://dx-doi-org-s.web.bisu.edu.cn/10.1080/17483107.2017.137 3151

19.

Hutchinson

Roberts

Kurrle

Daly

(2016). The emotional well-being of young people having a parent with younger onset dementia. Dementia, 15(4), 609–628. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301214532111

20.

Hutchinson

Roberts

Roach

Kurrle

(2020). Co-creation of a family-focused service model living with younger onset dementia. Dementia, 19(4), 1029–1050. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301218793477

21.

Jentoft

Holthe

Arntzen

(2014). The use of assistive technology in the everyday lives of young people living with dementia and their caregivers. Can a simple remote control make a difference? International Psychogeriatrics, 26(12), 2011–2021. https://dx-doi-org-s.web.bisu.edu.cn/10.1017/S1041610214001069

22.

Johannessen

Engedal

Thorsen

(2016). Family carers of people with young-onset dementia: Their experiences with the supporter service. Geriatrics, 1(4), 66. https://dx-doi-org-s.web.bisu.edu.cn/10.3390/geriatrics1040028

23.

Johannessen

Helvik

A. S.

Engedal

Thorsen

(2017). Experiences and needs of spouses of persons with young-onset frontotemporal lobe dementia during the progression of the disease. Scandinavian Journal of Caring Sciences, 31(4), 779–788. https://dx-doi-org-s.web.bisu.edu.cn/10.1111/scs.12397

24.

Johannessen

Möller

(2013). Experiences of persons with early-onset dementia in everyday life: A qualitative study. Dementia, 12(4), 410–424. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301211430647

25.

Kilty

Boland

Goodwin

de Róiste

Á.

(2019). Caring for people with young onset dementia: An interpretative phenomenological analysis of family caregivers’ experiences. Journal of Psychosocial Nursing and Mental Health Services, 57(11), 37–44. https://dx-doi-org-s.web.bisu.edu.cn/10.3928/02793695-20190821-02

26.

Kimura

N. R. S.

Maffioletti

V. L. R.

Santos

R. L.

Baptista

M. A. T.

Dourado

M. C. N.

(2015). Psychosocial impact of early onset dementia among caregivers. Trends in Psychiatry and Psychotherapy, 37(4), 213–219. https://dx-doi-org-s.web.bisu.edu.cn/10.1590/2237-6089-2015-0038

27.

Kinney

J. M.

Kart

C. S.

Reddecliff

(2011). ‘That’s me, the Goother’: Evaluation of a program for individuals with early-onset dementia. Dementia, 10(3), 361–377. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301211407806

28.

Larochette

Wawrziczny

Papo

Pasquier

Antoine

(2019). An acceptance, role transition, and couple dynamics-based program for caregivers: A qualitative study of the experience of spouses of persons with young-onset dementia. Dementia. Advance online publication. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301219854643

29.

Lockeridge

Simpson

(2013). The experience of caring for a partner with young onset dementia: How younger carers cope. Dementia, 12(5), 635–651. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301212440873

30.

Mayrhofer

A. M.

Mathie

McKeown

Goodman

Irvine

Hall

Walker

(2020). Young onset dementia: Public involvement in co-designing community-based support. Dementia, 19(4), 1051–1066. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301218793463

31.

Metcalfe

Jones

Mayer

Gage

Oyebode

Boucault

Aloui

Schwertel

Böhm

Tezenas du Montcel

Lebbah

De Mendonça

De Vugt

Graff

Jansen

Hergueta

Dubois

Kurz

(2019). Online information and support for carers of people with young-onset dementia: A multi-site randomised controlled pilot study. International Journal of Geriatric Psychiatry, 34(10), 1455–1464. https://dx-doi-org-s.web.bisu.edu.cn/10.1002/gps.5154

32.

Millenaar

J. K.

Bakker

Koopmans

R. T. C. M.

Verhey

F. R. J.

Kurz

Vugt

M. E. de.

(2016). The care needs and experiences with the use of services of people with young onset dementia and their caregivers: A systematic review. International Journal of Geriatric Psychiatry, 31(12), 1261–1276. https://dx-doi-org-s.web.bisu.edu.cn/10.1002/gps.4502

33.

Millenaar

J. K.

Bakker

van Vliet

Koopmans

R. T. C. M.

Kurz

Verhey

F. R. J.

de Vugt

M. E.

(2018). Exploring perspectives of young onset dementia caregivers with high versus low unmet needs. International Journal of Geriatric Psychiatry, 33(2), 340–347. https://dx-doi-org-s.web.bisu.edu.cn/10.1002/gps.4749

34.

Millenaar

J. K.

van Vliet

Bakker

Vernooij-Dassen

M. J.

Koopmans

R. T.

Verhey

F. R.

de Vugt

M. E.

(2014). The experiences and needs of children living with a parent with young onset dementia: Results from the NeedYD study. International Psychogeriatrics, 26(12), 2001–2010. https://dx-doi-org-s.web.bisu.edu.cn/10.1017/S1041610213001890

35.

Moon

Adams

K. B.

(2013). The effectiveness of dyadic interventions for people with dementia and their caregivers. Dementia, 12(6), 821–839. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301212447026

36.

Nichols

K. R.

Fam

Cook

Pearce

Elliot

Baago

Rockwood

Chow

T. W.

(2013). When dementia is in the house: Needs assessment survey for young caregivers. The Journal of Neurological Sciences, 40(1), 21–28. https://dx-doi-org-s.web.bisu.edu.cn/10.1017/s0317167100012907

37.

Oyebode

J. R.

Bradley

Allen

J. L.

(2013). Relatives’ experiences of frontal-variant frontotemporal dementia. Qualitative Health Research, 23(2), 156–166. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1049732312466294

38.

Page

M. J.

McKenzie

J. E.

Bossuyt

P. M.

Boutron

Hoffmann

T. C.

Mulrow

C. D.

Moher

(2021). The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. Bmj: British Medical Journal 372. https://doi.org/10.1136/bmj.n71

39.

Pipon-Young

F. E.

Lee

K. M.

Jones

Guss

(2012). I’m not all gone, I can still speak: The experiences of younger people with dementia. An action research study. Dementia, 11(5), 597–616. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301211421087

40.

Rabanal

L. I.

Chatwin

Walker

O’Sullivan

Williamson

(2018). Understanding the needs and experiences of people with young onset dementia: A qualitative study. BMJ Open, 8(10), e021166. https://dx-doi-org-s.web.bisu.edu.cn/10.1136/bmjopen-2017-021166

41.

Ritchie

Tolson

Danson

(2018). Dementia in the workplace case study research: Understanding the experiences of individuals, colleagues and managers. Ageing & Society, 38(10), 2146–2175. https://dx-doi-org-s.web.bisu.edu.cn/10.1017/S0144686X17000563

42.

Robertson

Evans

(2015). Evaluation of a workplace engagement project for people with younger onset dementia. Journal of Clinical Nursing, 24(15–16), 2331–2339. https://dx-doi-org-s.web.bisu.edu.cn/10.1111/jocn.12852

43.

Rostad

Hellzén

Enmarker

(2013). The meaning of being young with dementia and living at home. Nursing Reports, 3(1), e3. https://dx-doi-org-s.web.bisu.edu.cn/10.4081/nursrep.2013.e3

44.

Sakamoto

M. L.

Moore

S. L.

Johnson

S. T.

(2017). “I’m Still Here”: Personhood and the early-onset dementia experience. Journal of Gerontological Nursing, 43(5), 12–17. https://dx-doi-org-s.web.bisu.edu.cn/10.3928/00989134-20170309-01

45.

Sansoni

Duncan

Grootemaat

Capell

Samsa

Westera

(2016). Younger onset dementia: A review of the literature to inform service development. American Journal of Alzheimer's Disease and Other Dementias, 31(8), 693–705. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1533317515619481

46.

Spreadbury

J. H.

Kipps

C. M.

(2019a). Measuring younger onset dementia: A comprehensive literature search of the quantitative psychosocial research. Dementia, 18(1), 135–156. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301216661427

47.

Spreadbury

J. H.

Kipps

(2019b). Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers. Dementia, 18(2), 579–598. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301216684401

48.

Stamou

Fontaine

J. L.

O’Malley

Jones

Gage

Parkes

Carter

Oyebode

(2020). The nature of positive post-diagnostic support as experienced by people with young onset dementia. Aging & Mental Health, 112, 1–9. https://dx-doi-org-s.web.bisu.edu.cn/10.1080/13607863.2020.1727854

49.

Svanberg

Stott

Spector

(2010). ‘Just helping’: Children living with a parent with young onset dementia. Aging & Mental Health, 14(6), 740–751. https://dx-doi-org-s.web.bisu.edu.cn/10.1080/13607861003713174

50.

Thorsen

Dourado

M. C. N.

Johannessen

(2020). Developing dementia: The existential experience of the quality of life with young-onset dementia—A longitudinal case study. Dementia, 19(3), 878–893. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/1471301218789990

51.

Van Rickstal

De Vleminck

Aldridge

M. D.

Morrison

S. R.

Koopmans

R. T.

van der Steen

J. T.

Engelborghs

Van den Block

(2019). Limited engagement in, yet clear preferences for advance care planning in young-onset dementia: An exploratory interview-study with family caregivers. Palliative Medicine, 33(9), 1166–1175. https://dx-doi-org-s.web.bisu.edu.cn/10.1177/0269216319864777

52.

von Kutzleben

Schmid

Halek

Holle

Bartholomeyczik

(2012). Community-dwelling persons with dementia: What do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia. Aging & Mental Health, 16(3), 378–390.

53.

Wadham

Simpson

Rust

Murray

(2016). Couples' shared experiences of dementia: a meta-synthesis of the impact upon relationships and couplehood. Aging & Mental Health, 20(5), 463–473.

54.

Walsh

Downe

(2005). Meta-synthesis method for qualitative research: A literature review. Journal of Advanced Nursing, 50(2), 204–211. https://dx-doi-org-s.web.bisu.edu.cn/10.1111/j.1365-2648.2005.03380.x

55.

Wawrziczny

Pasquier

Ducharme

Kergoat

M. J.

Antoine

(2017a). Do spouse caregivers of persons with early- and late-onset dementia cope differently? A comparative study. Archives of Gerontology and Geriatrics, 69, 162–168. https://dx-doi-org-s.web.bisu.edu.cn/10.1016/j.archger.2016.12.002

56.

Wawrziczny

Pasquier

Ducharme

Kergoat

M. J.

Antoine

(2017b). Do spouse caregivers of young and older persons with dementia have different needs? A comparative study. Psychogeriatrics: the Official Journal of the Japanese Psychogeriatric Society, 17(5), 282–291. https://dx-doi-org-s.web.bisu.edu.cn/10.1111/psyg.12234

57.

Westera

Fildes

Duncan

Samsa

Capell

Grootemaat

Sansoni

(2016). Literature review and needs and feasibility assessment of services for people with younger onset dementia. Australian Health Services Research Institute. 371

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

0.54 MB