Young-onset Dementia Research Articles

Online peer support for people with Young Onset Dementia: development of a Best Practice Guidance

Objective:Peer support can be very valuable for people with Young Onset Dementia (YOD) (diagnosis before the age of 65). People with YOD often experience stigma, putting them at a higher risk of social isolation. In the United Kingdom, availability of age-appropriate, in-person peer support services is inconsistent, and as a result many people may miss out on the potential benefits. Online peer support could be a solution, as it overcomes geographical barriers, and offers a variety of platforms and modes of communication. This study aimed to explore how people with YOD experience online peer support, identify potential barriers to online peer support, and get insights into how online peer support can be optimized. The findings were used to develop a Best Practice Guidance on online peer support for people with YOD, and specific guidelines for facilitators of online peer support groups.Method:This study was conducted between October 2019 and December 2022. It followed the Medical Research Council (MRC) guidelines on complex interventions and focused on the development stage. The study consisted of multiple sub-studies, which all contributed to the Best Practice Guidance. The sub-studies included literature reviews, focus groups, an online survey, and interviews. All participants were people living with YOD.Results:Participants described online peer support as their lifeline which gave them hope and a sense of purpose again, after an often very difficult diagnostic and post-diagnostic period. For people in rural areas or who were unable to travel, online was the only way in which they could connect with their peers. However, many were unaware that online peer support exists, what it entails, and how they could get involved. This indicates a need for better advertisement of and signposting to (online) peer support.Conclusion:Online peer support can be beneficial for people with YOD. The Best Practice Guidance provides people with YOD with evidence-based information on what online peer support entails, facilitators with guidelines on how to optimize online peer support for people with YOD, and healthcare professionals with an opportunity to signpost people with YOD to online peer support.

Impairment in Awareness and its Domains Vary According to the Age at Onset of Dementia

Introduction:Awareness is the recognition of changes caused by deficits related to the dementia process. Awareness is related to a given object, like memory functioning or functional status. Objects of awareness can be grouped into a range of domains, including cognition, functional ability, emotional and social functioning, and behavioral difficulties. Preserved awareness in people with young onset dementia (YOD) has been reported; however, there is a lack of research investigating whether there are differences in the domains of awareness impairment according to the age at onset of dementia. This study compared the differences in awareness and its domains and examined associations with cognition, functionality, neuropsychiatric symptoms, social and emotional functioning, and quality of life (QoL) among people with YOD and late onset dementia (LOD).Methods:A group of 136 people with dementia and their caregivers (YOD= 50 and LOD= 86) were consecutively selected. We assessed awareness of disease, dementia severity, cognition, functionality, neuropsychiatric symptoms, social and emotional functioning, and QoL.Results:People with YOD presented more neuropsychiatric symptoms and worse cognition and functional ability than those with LOD. Compared to people with LOD, there were higher levels of awareness total score, awareness of cognitive functioning and health condition, and awareness of functional activity impairments domains in people with YOD, even in the moderate stage of the disease. There were no significant differences between groups in the emotional state, and social functioning and relationships domains of awareness. Multivariate linear regressions showed that functionality had a broad relationship with awareness in people with YOD. In contrast, neuropsychiatric symptoms and QoL were more significant to the awareness of people with LOD.Conclusion:Different clinical variables are associated with different domains in YOD and LOD groups, reinforcing the heterogeneity of awareness in dementia. Differences in awareness and its domains in YOD and LOD may be particularly relevant to enabling interventions focused on meeting their specific needs and those of their families.

Risk factors of young‐onset dementia: a UK Biobank study

AbstractBackgroundWhile age is the main risk factor for developing dementia, in young‐onset dementia (YOD) symptoms can already start before the age of 65 years. Genetic factors figure more prominent in the onset of YOD than late‐onset dementia but still only account for 5‐10% of the clinical YOD cases. It is therefore important to understand how modifiable risk factors, such as lifestyle or cardiovascular factors, and their interactions with genetic factors are associated with risk for YOD. The aim of this study was to examine a comprehensive set of factors and their association with the incidence of YOD.MethodWe used data from individuals aged under 65 years (n = 356,052) in the UK Biobank, a prospective population‐based cohort, to investigate risk factors related to YOD. Incidence of dementia was determined from hospital and death records. Potential risk factors were identified from systematic reviews on late‐onset dementia and YOD, including socio‐demographic, genetic, lifestyle, environmental, blood markers, cardiometabolic, psychiatric and other factors. These were analyzed in multivariable Cox proportional hazards regression.ResultDuring 2,891,409 person‐years of follow‐up, 485 cases of YOD were reported. Incidence rates for women increased from 1.88/100,000 person‐years in age 40‐44 to 53.38/100,000 person‐years in age 60‐64. In men incidence rates increased from 5.41/100,000 person‐years in age 45‐49, to 79.54/100,000 person‐years in age 60‐64. A total of 38 variables were analyzed. In univariable analyses, 30 factors were associated with YOD, of which 15 were significantly associated with the incidence of YOD in multivariable analyses. These variables included lower formal education, lower socioeconomic status, carrying the apolipoprotein ε4 allele, no alcohol use, alcohol intoxication, social isolation, vitamin D deficiency, high c‐reactive protein levels, lower handgrip strength (i.e., higher physical frailty), hearing impairment, orthostatic hypotension, stroke, diabetes, heart disease and depression.ConclusionThis study found potentially modifiable risk factors for YOD. While further exploration of these risk factors is necessary to validate our findings and identify potential underlying mechanisms, addressing these modifiable factors may prove effective in mitigating the risk of developing YOD.

Living with a person with young onset dementia ‐ spousal experience

AbstractBackgroundBeing of working age, and simultaneously needing to help a person with young onset dementia has specific consequences for spouses. Research to date has been sparse concerning this specific group of spouses.MethodNine spouses were included and interviewed in the study. The interviews were analyzed using content analysis.ResultThe results showed that the spouses experienced an emotional impact that varied from feelings of loneliness, frustration, and worry, to peace of mind. They expressed that they used coping strategies, which included adopting a positive mindset, adapting to inabilities, adopting an avoidant approach, and finding ways to recharge. Spouses also experienced a call for support from informal as well as formal support.ConclusionThe spouse of a person with young onset dementia goes through a range of emotional experiences and has resourceful ways of handling everyday life. The degree of support is varied which leaves more to be desired from healthcare providers.

FC38: Young Onset Dementia: Examining the experience through Family Systems Theory

Objective:Research tends to focus on the issues couples face – i.e., the dyadic relationship between carers and the affected person. This study examined young onset dementia from the broader family systems approach, focusing on the impact on the entire family following a diagnosis.Methods:Public patient involvement was utilised to explore the specific issues of relevance to people with young onset dementia. Participatory workshops with members of the Alzheimer Society of Irelands Dementia Research Advisory Team were held to develop questions for the focus group interviews. Focus group interviews involved people with young onset dementia and their family members. The sample (n = 44) included people with a formal diagnosis of young onset dementia (with various subtypes) living in the community, and their family members including children.Results:Analysis of the qualitative data uncovered five main themes with related sub-themes including: initial onset of dementia; personal and social impact; behavioural and psychological symptoms of dementia; age-appropriate support and the shifting family roles.Conclusion:It is clear from the current data that a diagnosis of young onset dementia results in significant challenges for the entire family system. The traditional model of care, which tends to narrow the focus to the person with dementia and primary caregiver, needs to be expanded to include the entire family/caregiving system.

Determinants underlying COVID‐19 vaccination behaviour in people with young‐onset dementia and their carers in the United Kingdom: A mixed‐methods study

AbstractBackgroundVaccine hesitancy is a risk to global health and has become particularly salient considering the COVID‐19 pandemic. To date, no studies have investigated COVID‐19 vaccination behaviour in people with young‐onset dementia (YOD) and their carers. This study aimed to fill this gap.Method26 participants with YOD and 24 carers for a person with YOD (i.e., aged <65 years) from the UK were enrolled. Participants filled out a self‐administered online questionnaire including demographic data, history of COVID‐19, and adulthood vaccination. Following this, participants attended a one‐to‐one semi‐structured interview focused on their experiences and thoughts on COVID‐19 vaccines and the vaccination process.ResultThe mean age of participants with YOD was 42.2 (range 26‐60), 88.5% were male, and 96.2% self‐identified as Black. The mean age of carers was 31.7 (range 19‐54 years), 70.8% were male, and 79.2% self‐identified as Black. In total, more than 30 reasons for acceptance and hesitation were identified. Willing to protect themselves, loved ones, and the community were identified as important reason to accept the vaccination by both groups. Recommendations from family members or healthcare professionals and wanting to go back to normal life were two of the most commonly repeated acceptance reason for people with YOD. Meanwhile, two of the most frequently mentioned acceptance reasons in carer groups were believing vaccination is the right thing to do and knowing the severity of COVID‐19.Several causes of vaccine hesitancy were mentioned by both groups, including fear of vaccine side effects and hearing negative news about the vaccination. In addition, people with YOD, but not carers, also identified fear of needles and suspicion that vaccination would exacerbate dementia as important causes of vaccine hesitancy. Important difficulties experienced in the vaccination process included long queues for vaccination, remote vaccine centre locations, and needing to be accompanied to the hospital for each dose.ConclusionParticipants delayed or refused COVID‐19 vaccination largely due to resolvable reasons such as a lack of time, issues around queuing, inaccurate information about vaccines, or previous negative experiences. Future research should explore the factors of COVID‐19 vaccination behaviour in women and in other ethnic groups.

Dementia Experts for Involvement Network-Young Dementia [DEfIN-YD]: Developing a national network of younger people with dementia prepared to get involved in research.

In September 2020, a University of Northampton (UK) team, led by Professor Parkes and Dr Mary O’Malley (now at the University of Worcester) were successful in securing funding from the Wellcome Trust Public Engagement Fund. The central aims of the DEfIN-YD project were to share knowledge about young onset dementia (YOD) research; create a younger onset dementia public and patient involvement (PPI) network; develop ideas for future YOD research; and provide a reference group to support researchers developing YOD projects. Currently, 21 people have been recruited into one of three regional groups. Prof Parkes leads the Midlands group, Dr Cole from University of West London hosts the Southern group, and Bradford University supports the Northern group. The members were recruited via the Young Dementia Network (YDN), Dementia UK, Alzheimer’s Society, the DEEP network, and local NHS Services. They come from urban and rural settings across the UK. Some attend the meetings alone and others are supported by advocates (usually carers). They have a variety of diagnoses and are at different stages of their dementia journey. The groups include members from different cultural backgrounds. They are able to share their personal experiences and are keen to do so in order to improve the care experiences of others. Due to COVID, members effectively completed all 5 regional workshop sessions from August 2021-March 2022 via Microsoft Teams. They are now fully prepared to engage in designing and developing YOD research projects. The top priority they identified for future research was for professionals to be more specifically trained in YOD. Once the workshops were designed and delivered, the first phase of the project was complete. Phase 2 (from April-October 2022) has sort to capture the experiences of participating in the workshops from the group members, facilitators, and project team; as well as developing a sustainable model for the future of the regional groups. The project comes to an end on the 31st March 2023.In this presentation we would like to explore the following objectives: Why we need specific YOD PPI research groups.How we run the workshops and meetings.How we hope to sustain the groups.

Euthanasia on their mind: a qualitative analysis of spontaneous expressions of people with young-onset dementia and their family caregivers.

Introduction:Previous research showed that people with young-onset dementia and their family caregivers spontaneously addressed the topic of euthanasia when talking about the broader topic of advance care planning. A better understanding of what people address and why may provide innovative insights to inform the evolving physician assisted dying legislation worldwide. This study aimed to identify what people with young-onset dementia and their family caregivers spontaneously expressed regarding (communication about) euthanasia when discussing the topic of advance care planning.Methods:A secondary qualitative analysis was conducted, through the method of constant comparative analysis on semi-structured interviews. We included 10 people with young-onset dementia and 25 family caregivers in Flanders, Belgium.Results:Respondents described similar contexts for discussions about euthanasia: the topic arose at several key moments, usually with informal caregivers, and was motivated by patients considering the impact of disease progression both for themselves, thereby mainly wanting to avoid decline and maintain dignity, and their loved ones. Family caregivers paid considerable attention to the legality of euthanasia in dementia, specifically with regard to cognitive capacity, and elaborated on the difficulties and emotional impact of discussing euthanasia.Conclusions:Considerations of people with young-onset dementia towards euthanasia appeared rooted in personal unbearable suffering and in expected interpersonal and societal consequences of their condition. Negative social framing of young-onset dementia might contribute to the livelihood of euthanasia in respondents’ thoughts. The incorporation of euthanasia as a legal end-of-life option was mirrored in its incorporation in patients’ and family caregivers’ thought framework.

Perspectives of people with young-onset dementia on future quality of life: a qualitative interview study with implications for advance care planning

Introduction:Advance care planning (ACP), one of the key domains of palliative care, enables individuals to define and discuss goals and preferences for future treatment and care with family and healthcare professionals. By exploring the views of people with dementia on quality of life now and in the future, including the end of life, care provisions can be tailored to their values. The perspectives of people with young-onset dementia (YOD), with a symptom onset before the age of 65, may differ from those of older people with dementia given the different life phase and family context. Qualitative research methods can be used to elicit the attitudes and beliefs to generate insight into their perspectives.Methods:Qualitive study, as part of the Care4Youngdem-study, using semi-structured interviews with a criterion-based purposive sample of community-dwelling people with YOD (n=10) and their (family) caregivers in the Netherlands. We adapted the interview guide based on discussion of the transcripts. Double coding of three interviews resulted in a codebook. The codes were subsequently analysed through thematic analysis.Results:Interviews took place between December 2019 and February 2022. The most prevalent dementia subtype was Alzheimer’s (n=7). Four overarching themes, based on 21 categories, were derived from the interviews: (1) connectedness with others, (2) sense of dignity, (3) acceptance versus no acceptance of the impact of dementia, (4) concerning oneself with the future versus not wishing to concern oneself with the future. Connectedness with others and a sense of dignity were deemed prerequisites for (future) quality of life but were affected by YOD. These themes overlapped in terms of axial codes. Ambiguities were seen in the attitude towards the impact of YOD and the preparation for the future. The degree of acceptance of YOD affected the orientation towards the future.Discussion:Family and professional caregivers should discuss with people with YOD how to maintain connectedness with others and a sense of dignity. Opposite ways of coping with the present and future were found. Professional caregivers should take personal coping styles into account when starting ACP conversations.

Developing dementia: The existential experience of the quality of life with young-onset dementia – A longitudinal case study

Introduction:Cognition and the ability to take care of daily activities and oneself gradually declines among people with dementia. Studies are scarce, especially regarding how people with young-onset dementia (YOD) (<65 years) experience the quality of their lives with the progression of dementia. People with dementia living alone face special challenges. The aim was to examine the experience of the quality of life with YOD as a single person.Methods:The study presents a longitudinal case study with in-depth interviews exploring the experiences of a person with YOD. Individual interviews were conducted seven times over a period of three years from 2014 to 2017.Results:We examined if and how seven themes concerning the quality of life and well-being were fruitful for understanding the experiences of dementia in the everyday life of a single individual. The study explored needs and challenges during the development of dementia, and how the person reacted over time, set in context. The themes significant for well-being are: identity, connectedness, security, autonomy, meaning, growth and joy.Conclusion:The study shows how treatment, support, and services must be individualized when dementia develops in order to support identity, resources and mastering capacity, and promote well-being.

Meeting IPA Shared Interest Forum on Young-onset Dementia

With the rising prevalence of dementia, numbers of people with Young Onset Dementia will probably increase too. Young onset dementia is increasingly being recognized as an important psychosocial and medical health problem with serious consequences for both patients and their families. In several countries it is acknowledged that this group of people, in which dementia started before the age of 65 years, has special needs and therefore a need for support and health care services that are particularly designed to fit those needs. However, the number of these special health care services is scarce.Main Objectives of the Young Onset Dementia Shared Interest Forum:Establishing a network of professionals and researchers that are involved in the care and research of people with Young Onset DementiaExchanging ideas between countries to improve care for people with Young Onset DementiaEstablish international research projects.During the meeting we will explore opportunities for international collaboration in new research projects.

Together Stronger: A creative arts program for children of a parent with young onset dementia

AbstractBackgroundWorking age individuals who develop dementia experience significant challenges to their ability to keep working. This has wide ranging impacts not only on the individual but also for their families, many of which include young children. Presently there is limited knowledge of the impact on children of having a parent with YOD or of resources to support these children.MethodEight children aged between 8‐19 took part in Together Stronger, a community based creative arts programme for children of a parent with young onset dementia. Hosted by the Museum of English Rural Life (MERL) the program ran in a hybrid format over eight bi‐weekly sessions. Activities included willow weaving, storytelling with museum artefacts, and baking together. The impact on the children’s wellbeing and social engagement was assessed using mixed methods.ResultQualitative results suggest an overall improvement in the wellbeing of the children whilst quantitative wellbeing results were inconclusive. The children were overwhelmingly positive about the creative activities and wished the group would continue. They particularly liked that the group did not focus on their parent’s dementia but instead was about creative activities. The children enjoyed the social aspect and appreciated the opportunity to spend time with other people in the same situation.ConclusionThis community‐based project for children of parents with young‐onset dementia shows promising results in terms of feasibility, acceptability and impact. Participants' feedback on the structure and contents of the sessions provides useful recommendations regarding future service provision.

Cross-sector learning collaboratives can improve post-diagnosis care integration for people with young onset dementia

Introduction:Post-diagnosis young onset dementia (YOD) care is often fragmented, with services delivered across aged care, health care, and social care sectors. The aim of this project was to test the feasibility and effectiveness of a learning collaborative implementation strategy for improving the cross-sector integration of care for people with YOD.Methods:We conducted a longitudinal mixed-methods process evaluation, and recruited one representative from three Australian aged care organisations, three disability care organisations, and three organisations contracted to deliver care navigation services. One representative from each organisation joined a learning collaborative within their local area and completed a six-module online education package incorporating written resources, webinars, collaboration, and expert mentoring. Participants identified gaps in services in their region and barriers to care integration, and developed a shared plan to implement change. Normalisation Process Theory was applied to understand acceptability, penetration, and sustainability of the implementation strategy, as well as barriers and enabling factors.Results:Dementia knowledge measured by the Dementia Knowledge and Awareness Scale was high among the professionals at the start of the implementation period (Mean = 39.67, standard deviation = 9.84) and did not change by the end (Mean=39.67, standard deviation = 8.23). Quantitative data demonstrated that clinicians dedicated on average half of the recommended time commitment to the project. However, qualitative data identified that the learning collaborative strategy enhanced commitment to implementing integrated care and promoted action toward integrating previously disparate care services. Participant commitment to the project was influenced by their sense of obligation to their team, and teams that established clear expectations and communication strategies early were able to collaborate and use the implementation plan more effectively (demonstrating collective action). Teams were less likely to engage in the collective action or reflexive monitoring required to improve care integration if they did not feel engaged with their learning collaborative.Discussion:Learning collaboratives hold promise as a strategy to improve cross-sector service collaboration for people with YOD and their families but must maximise group cohesion and shared commitment to change.

A model for direct support of people with rare dementias, their families and practitioners

AbstractRare Dementia Support (RDS) is a UK‐based collaborative service led by the UCL Dementia Research Centre, which aims to empower, guide and inform people living with a rare dementia diagnosis and those who care about them. RDS covers familial Alzheimer’s disease (FAD), frontotemporal dementia (FTD), familial frontotemporal dementia (fFTD), posterior cortical atrophy (PCA), primary progressive aphasia (PPA), Lewy body dementia (LBD) and young‐onset Alzheimer’s disease (YOAD). Following self‐referrals and clinical referrals from memory services and specialist neurology clinics across the UK, we provide one‐to‐one support and facilitate regular opportunities for members to meet each other and the team, through large and small support groups, themed programmes and regional support groups.We will describe the practices of the one‐to‐one Direct Support Team, which provides free information, advice and support from pre‐diagnosis navigation through to post‐bereavement support. This specialist emotional and practical support encompasses compassionate listening; solution focussed outcomes (to complement the diagnosis, treatment and monitoring); helping people to understand and adapt to their condition; empowering people to use their strengths to live fulfilled lives; designing strategies and interventions to manage complex situations (including issues of safeguarding, deprivation of liberty, etc); legal rights and financial support; and supporting transitions into later stages and end of life.We will also relate the practices of direct support to the broader principles of RDS as a whole (see Figure 1), including the implications of never discharging anyone from our service, and balancing person‐centred and disease‐specific approaches (the importance of knowing which disease each person has, and what person the disease has).An evaluation of the service will be presented, including characterisation of the current 4797 members, plus data from individual support consultations in 2022 (N = 1449) relating outcomes to personal (social connectedness, wellbeing, knowledge of condition and services), disease (diagnosis, severity) and service (support usage, intensity of discussion) factors.We will conclude by discussing existing examples of and new opportunities for partnership working – with local, national and international charities, clinical services, academic institutions and funding organisations – to improve access to specialist support for those with atypical, inherited and young onset dementias.

P113: Psychosocial interventions for dementia grief- a systematic review

Objective:Dementia grief can be described as a caregiver’s anticipatory grief experience due to losses occurring before the care recipient’s physical death. Among other things, these losses can include loss of memory, intimacy, communication, relationship resolution, and family identity. Psychosocial interventions have been developed to address and reduce these pre-loss grief reactions. The objective of this systematic review was to synthesize the evidence on existing dementia grief interventions for caregivers of persons with dementia (PwD).Methods:Electronic databases Web of Science (SSCI), PsycArticles, Psychology and Behavioral Sciences Collection, PsycINFO, PSYNDEX Literature with PSYNDEX Tests and MEDLINE were searched from September 2016 to September 2021. The systematic review was carried out following PRISMA guidelines and it was registered to the PROSPERO database (CRD42021268998). All adult family or friend carers of older persons with dementia were included. All types and severity stages of dementia were included except studies about young onset dementia and dementia grief. Also, family carers could not be bereaved.Results:The 12 included studies contained multifaceted interventions with heterogenous formats. Eight studies had a quantitative, two a qualitative and two a mixed method design. Sample size ranged from two to 273 participants. Interventions included elements of psychoeducation, cognitive and emotional therapeutic strategies based on CBT, acceptance- based and mindfulness-based strategies. The interventions showed statistically significant small to moderate effects on dementia grief. In addition to the effects on dementia grief, the interventions also had a positive impact on mental health-related variables such as burden, depression, empowerment, and resilience.Conclusion:There has been an increase in dementia grief interventions suggesting that dementia grief has been acknowledged as a valid and important construct to describe the dementia caregiver experience. It remains unclear whether health care providers know about and implement elements of the grief interventions in every day clinical encounters with dementia caregivers. Thus, future research should determine the practicing health care providers’ knowledge about dementia grief and its available interventions. Furthermore, it should be examined whether the intervention effects are transferable to caregivers of patients with other terminal illnesses or degenerative disorders, or whether they must be modified.

Workshop 3: Develop, implement and evaluate technology for social health in dementia: lessons in best practice from the European DISTINCT network

Objective:DISTINCT is a Marie Sklodowska-Curie Innovative Training Network. Supported by the INTERDEM network and European Association of Geriatric Psychiatry, DISTINCT aimed to establish a multi-disciplinary, multi-professional and intersectorial European research framework, for assistive technologies to support social health in dementia. In this symposium, we present research associated with the maturity lifecycle (development to evaluation) of four technologies: the ROADMAP online self-management intervention; online peer support for people with young onset dementia; online acceptance and commitment therapy for caregivers (ACT); and the FindMyApps tablet-based intervention for people with dementia and their caregiver.Method:In 2019, 15 ESRs were recruited to 13 research organizations across 8 European countries. Research projects were launched in collaboration with people living with dementia and caregivers, and industry partners. Projects were adapted to meet challenges and opportunities due to the COVID-19 pandemic. The projects presented in this symposium employed a variety of research paradigms (user-centred design, feasibility and implementation studies, randomized controlled trials). Key insights from each project were combined into best practice guidance for developers, researchers, healthcare professionals and people living with dementia, covering the full innovation lifecycle.Results:All DISTINCT research projects are now in the final stages, having so far resulted in more than 35 peer reviewed publications and many contributions to international conferences. Insights were incorporated into the Best Practice Guidance for Human Interaction with Technology in Dementia, published in December 2022, which will be updated by the end of 2023 with further insights from completed projects. Key findings presented in this symposium concern: development of ROAD MAP online; best practices for, and barriers to, online peer support; acceptability and preliminary effectiveness of online ACT; effectiveness and cost effectiveness of FindMyApps.Conclusion:There is growing evidence that assistive technologies are feasible and effective for supporting social health of people with dementia and caregivers. People living with dementia, formal and informal caregivers, policymakers, designers, and researchers can refer to the DISTINCT Best Practice Guidance to inform their approach to assistive technology. Future research can build on these results, to further understand and improve usability, (cost-)effectiveness, and implementation of assistive technology in dementia.

FC39: The influence of social constructivism on children and young adults perspectives of parental young onset dementia: A thematic analysis of the narratives

Background:Western countries have a significant cohort of children (≤ 18) and young adults who live with a parent with a life limiting condition. Children and young adults’ perspectives of certain parental illnesses have been well documented. However, the perspectives of children and younger adults of parental young onset dementia tend to be absent from the academic literature. Older adult children have reported on the impact parental young onset dementia, however, there is a necessity for research with younger adult children and children under the age of eighteen in relation to their perspectives of the condition.Objectives:Utilizing cultural transmission theory, the current research explored if the social and cultural perspective influences the narratives of children and younger adults of parental young onset dementia.Methods:One-to-one interviews were held with children and younger adults (n = 17: 29·41% male) who currently live with (or have lived with) a parent with a formal diagnosis of young onset dementia (with various subtypes). The participants ranged in age from 14 to 33 years old (x̅ = 21·18 years) with n = 6 eighteen years of age or younger (x̅ = 16·17 years). Participant narratives were analyzed using inductive qualitative thematic analysis.Results:Detailed thematic analysis of the participant narratives uncovered five main themes (with related subthemes); making sense; lack of representation; threat to the family system; life has completely changed; systemic psycho-social support and education.Conclusion:It is clear from the current data that the social and cultural perspective can significantly influence the narratives of children and younger adults of parental young onset dementia. Children are faced with more responsibility, shifting roles, changing relationships, and may be forced to postpone educational or employment plans. Furthermore, the social perception of dementia as can act as a barrier to children and young adults accessing and using health and social care providers.

FC11: Guided low-intensity behavioural activation intervention delivery preferences among people with dementia, informal caregivers, and professional stakeholders: a qualitative study (the INVOLVERA Study)

Background:Despite a need to provide support to people with dementia and informal caregivers to live well with dementia, the availability of psychological interventions to enhance wellbeing and support mental health problems such as depression for people with dementia are limited. A potential solution is behavioural activation, an evidence-based intervention for depression that seeks to target behavioural avoidance. Behavioural activation can be delivered in a written self-help format, with support provided by an informal caregiver, who in turn receives guidance from a healthcare professional. However, it is necessary to develop and tailor self-help interventions to the needs and preferences of specific populations.Objective:To explore the needs and preferences of people with dementia, informal caregivers, and professional stakeholders to ensure cultural appropriateness, relevancy, and acceptability of the intervention.Methods:Participatory action research with co-design principles using semi-structured interviews and focus groups. People with dementia (n=8), informal caregivers (n=19), healthcare professionals (n=18), and community stakeholders (n=7) were provided with draft versions of the behavioral activation written self-help intervention and a proposed intervention delivery model. Open-ended questions explored preferences concerning preferred intervention delivery setting, type of support and guidance provided, perceived relevance of the intervention content and language, and ways to enhance relevancy, cultural appropriateness, and acceptability.Results:Analysis resulted in an overarching theme: Tailoring and flexibility, and three categories: Intervention process, material and context; Support and guidance; and Time. Results informed adaptations to the intervention content and delivery model, including: (1) reducing the amount of material to minimise treatment burden; (2) increasing the relevance of case stories and illustrations to Swedish society and culture; (3) modernising the design and illustrations; (4) including a case story of a person with young onset-dementia; (5) increasing the flexibility of the delivery model (e.g., delivery outside of traditional health care settings); and (6) providing additional guidance to informal caregivers.Conclusion:Stakeholders expressed a need for tailoring and flexibility throughout intervention delivery, and for cultural adaptations to intervention content to improve perceived appropriateness and relevance. A planned feasibility study will examine the feasibility, acceptability, relevancy and cultural appropriateness of the intervention and delivery model.

P52: Gardening for others as meaningful activity for people living with dementia

Objective:Time in nature is increasingly recognised as beneficial for people living with dementia, with research often focusing on the benefits of physical activity, proximity to natural environments and social interactions. However, limited research has investigated the role of purpose while gardening for people living with dementia. Purposeful activities are often lacking in programs for people living with dementia, who are sometimes excluded and have their capabilities underestimated, especially those with younger-onset dementia. Yet, these purposeful activities may be key to supporting people living with dementia to retain a sense of self-worth and connection to their communities.This project documented participants’ experiences of purposeful activity in the form of volunteering at a farm producing food for community members in need.Methods:Individuals living with dementia participated in farming activities over several weeks to help grow food for people in need. During this time, participants completed ‘walking interviews’, discussing the tasks undertaken, their perspectives on these tasks, how these activities fitted in with their own ways of being, and how they felt spending time in nature. Walking interviews provide contextual and environmental cues that may facilitate emotional and sensory connection in a way that traditional interviews do not. Their shorter and more flexible time frame provides additional adaptability for people living with dementia.Results:Walking interviews were audio-recorded, transcribed and thematically analysed. These analyses describe participants’ experiences at the farm, related to purpose in life. These included participants’ connection to times in their lives when they provided support, assistance or service to others, and their experience of engaging with the natural environment.Conclusion:This research contributes to understanding of benefits of purpose-focused time in nature, including that it provides an opportunity for people living with dementia to connect with different points in their lives when they have held other forms of purpose. Tips on setting up such a safe, enjoyable, inclusive gardening project are provided. Additional research into meaningful engagement in natural settings is warranted for people living with dementia, especially when it involves activities with benefit to communities.This project was supported by the Australian Association of Gerontology’s Hal Kendig Research Development Program.

Continuity, coping and finding meanings in everyday life: Storytelling by family members of people with young onset dementia

Objective: This narrative study explores how family members readjust to young onset dementia (YOD) being a part of their everyday life during the first four years of their family member’s illness. Background: Young onset dementia affects family relationships and challenges their life situation from the onset of the illness. It is therefore important to recognise and understand the family members’ supportive and resisting issues as well as their coping styles. Method: The data was collected in Finland by conducting interviews with 16 family members of people with YOD and these were repeated once a year for four years (2019 to 2022). The actant model was used to carry out the analysis. Results: Narrating the situation helps family members reconstruct their own story of their changed situation. Family members adjust their life situation at the beginning of the YOD diagnosis by retaining their daily continuity, coping, and by finding meanings. These require a recognition and an acceptance of the changes that YOD creates in relationships and daily living and may lead to a storyline that is broken, adaptive or alternative. Conclusion: When family members engage in storytelling, this can result in an increased awareness of their situation and lead them to identify opportunities and problems and solve them. This also leads to their readjustment to dementia as a part of their own personal narrative.