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Introduction: People living with young-onset dementia and their care-partners are at risk of a range of adverse mental health outcomes and social isolation. There are few interventions aimed at supporting couples affected by young-onset dementia, which poses unique psychosocial challenges for younger people. Methodology: This pre-post interventional mixed methods pilot study aimed to assess the feasibility and acceptability of an online group program for people with young-onset dementia and their care-partners living at home in Australia. The Music And Psychology and Social connections (MAPS) program aimed to address: (1) the challenges and changes associated with young-onset dementia; and (2) coping and wellbeing. The program involved six weekly two-hour sessions co-facilitated by a psychologist and music therapist, and a private Facebook group. The primary outcomes of feasibility and acceptability were assessed through a post-program focus group, separate individual feedback sessions with each couple, and a program evaluation questionnaire. Thematic analysis was conducted on the focus group transcripts and field notes from couple feedback sessions. We also examined the preliminary utility of MAPS in improving mental health and social connectedness, using quantitative pre-post-measures. Results: Five couples completed the MAPS program. The most common dementia type was Alzheimer's Disease. Participant attendance was 87% across all sessions. Qualitative findings supported acceptability of the program with four emergent themes: being connected to others with shared experiences; reframing thoughts and feelings about dementia; music as a therapeutic tool; and benefits of MAPS. Conclusion: The high retention rate, qualitative findings and positive program evaluation suggest MAPS may be a promising, feasible and acceptable program for couples affected by young-onset dementia. [ABSTRACT FROM AUTHOR]

Background. The diagnosis of young-onset dementia presents significant challenges both for the person and their families, which often differ from the challenges faced with late-onset dementia. Evidence of the experience of service users and carers tends to reveal a negative appraisal of the care received, citing longer diagnosis times, poor clinician knowledge and lack of age-appropriate care. However, evidence looking into staff experiences of supporting someone with young-onset dementia is relatively scarce. The aim of this study was to explore the experiences and reflections of health and social care staff who support people with young-onset dementia within older adult mental health services, and whether their knowledge of the systems they work in could reveal the existence of barriers or facilitators to young-onset dementia care. Methods. Health and social care professionals working with people and carers with young-onset dementia across England were remotely interviewed between September and December 2021. Data were analysed using inductive thematic analysis. Findings. Sixteen staff members were interviewed. Three themes were constructed with six sub-themes. The first theme related to the perception of greater complexity around young-onset dementia support. The second theme describes staff fears around their ability to effectively support people with young-onset dementia, including the perception that young-onset dementia requires specialist input. The final theme describes systemic and structural inefficiencies which provide additional challenges for staff. Conclusions. Providing effective support for people with young-onset dementia and their families requires adjustments both within the clinician role and mental health services. Staff considered young-onset dementia support to be a specialist intervention and felt the services they work for are suited to generic mental health and dementia provision. Findings are discussed with recommendations relating to developing a standardised model of dementia care for young-onset dementia which recognises and responds to the unique experiences of young-onset dementia. [ABSTRACT FROM AUTHOR]

Background: Family caregivers are fundamental in supporting people living with dementia to remain at home, however, psychological distress can occur as a result of their caring role. Research into interventions for caregivers of people living with young-onset dementia, including their experience of and the mediating processes of such interventions, remains limited. Methods: An Interpretative Phenomenological Analysis explored caregiver experiences and influence on caregiving of participating in a "Responding to Distress in Dementia" group. Five family caregivers were interviewed with discussions covering the period from first noticing symptoms to the interview session. Results: Within the group experience, four superordinate themes were identified: 'connecting to other caregivers', 'l earning about caregiving', ' group factors' and ' reduced caregiver distress'. During the post-group period, three superordinate themes were recognised: 'maintaining support', 'applying learning', and 'normalising caregiving'. Conclusions: The study highlighted several interrelated themes involving creating connections amongst caregivers with similar experiences, social learning, and supportive learning through group structure and facilitation. Many of the processes reflected those found in existing dementia caregiver intervention research. Recommendations included facilitating peer support groups and exploring whole-family approaches. [ABSTRACT FROM AUTHOR]

Objectives: This study aims to explore the journey to dementia diagnosis and reaction to the diagnosis from the perspective of people with young-onset dementia living in the community from diverse areas in Australia (metropolitan, regional, rural) and their family caregivers. Methods: Semi-structured interviews were conducted with community-dwelling people with early to moderate young-onset Alzheimer's disease (n = 8) or frontotemporal dementia (n = 5) and one person with both Alzheimer's disease and frontotemporal dementia, and family caregivers of community-dwelling people with young-onset Alzheimer's disease and/or frontotemporal dementia (n = 28). This study employed interpretive description. Thematic analysis was conducted for emergent themes, comparisons and interplay between themes. Findings: The journey to the diagnosis is characterised as involving an extensive period of the gradual worsening of symptoms, drawn out investigations, and difficulties facing the prospect of a diagnosis of young-onset dementia. Participants with young-onset dementia struggled to manage their symptoms and the process of seeking a diagnosis was often slow due to difficulties during the course of their medical investigations and feeling reluctance to face the possibility of having dementia. Once participants finally received the diagnosis of young-onset dementia, participants with young-onset dementia and their family caregivers experienced feelings of devastation and shock, in some cases denial and avoidance, and even, confirmation and relief at having received a diagnosis. In some instances, participants experienced more than one of these reactions. There was a profound realisation by participants that a diagnosis of young-onset dementia had serious implications on their life and future. Conclusion: The journey to diagnosis was found to be a drawn-out process and receiving the diagnosis was a shock for both people with young-onset dementia and their family caregivers. The findings highlight the significance of the role healthcare professionals play in both the diagnostic and post-diagnostic journey, particularly in terms of supporting patients with young-onset dementia and their family caregivers. [ABSTRACT FROM AUTHOR]

Receiving a diagnosis of dementia before the age of 65 has a huge impact on everyday life. Previously, the disease trajectory has mainly been described from the perspective of older persons. However, young persons with dementia are confronted with specific challenges, influencing the type of life-changing events, or 'critical points' that they may experience. The aim of this study was therefore to describe experiences of persons recently being diagnosed with young-onset dementia. In total, 14 participants with dementia due to Alzheimer's disease (10 woman/4 men) with an average age of 59 were included in the study. Interviews were conducted within 2 months after receiving the diagnosis and analyzed using qualitative content analysis with an inductive approach, resulting in three categories: (1) A life changing moment, (2) An ongoing process, and (3) Remaining in control. The findings show that receiving such a diagnosis was experienced by participants as a life changing moment, followed by them seeking to come to terms with the diagnosis and reflecting on its meaning, in which various strategies were adopted to remain in control. The current study highlights three critical points considering the diagnosis of young-onset dementia that warrant special attention and provides insight into factors related to delay in healthy transitioning after receiving the diagnosis, as well as factors that may facilitate successful transitions. [ABSTRACT FROM AUTHOR]

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

Background: Dementia is a key health issue worldwide. In Sweden, as in other European countries, most persons with dementia live in domestic settings and are often cared for by their family members. This scoping review aims to describe the perspectives of children and young adults with a parent diagnosed with dementia. Young family members may be alone and without support despite their high level of care burden. Design and methods: Three electronic databases (PubMed, Web of Science and PsycINFO) were used to search for English-language articles focusing on children and young adults between the ages of 6 and 34 who have a parent diagnosed with dementia. A thematic synthesis of the included articles was performed. Findings: Sixteen original published qualitative studies were identified. These studies were categorised based on information about the authors, year of publication, study location, participants, aim of the study, data collection, analysis and main findings. Five main analytical themes were identified: (1) children and young adults identify changes in their parents' behaviour and personality, (2) children and young adults experience changed roles and relationships within the family, (3) children and young adults need to cope with an uncertain future, (4) children and young adults relate changes in their parent to their own mixed emotions and (5) children and young adults need help and seek it out but experience inadequate support. Conclusions: The children and young adults in the included studies seem to provide significant levels of care and support to their affected parent, which may affect their own health, social relations, community participation, employment, education, finances and sense of security. This means that it is important for health care systems and social services to identify barriers to these young family members' access to relevant care and support for themselves. [ABSTRACT FROM AUTHOR]

Objective: In this study, we assessed a support program based on acceptance, role transition, and couple dynamics for spouses of people with young-onset dementia. The qualitative feedback from the caregivers' experience is analyzed. The goal was to explore how this home-based support program is perceived and to appraise the impact of the different approaches that were offered. Design: A thematic analysis was conducted on the answers to the end-of-session questionnaires and the follow-up semistructured interviews. Results: Five themes emerged from the analyses. They highlighted caregivers' ability to overcome their emotional struggle as well as the control of their loved one's behaviors. The results also showed the possibility for caregivers to access new ways to support their loved ones and to maintain the quality of their relationship. Conclusion: These findings represent preliminary evidence of this program's efficacy for caregivers. [ABSTRACT FROM AUTHOR]

The experience of taking care of spouses with young-onset dementia has been identified as unique and merits considerations. However, current knowledge about this area in Chinese spousal caregivers is scarce. A qualitative descriptive study was therefore conducted to explore the experience of spousal caregivers of persons with young-onset dementia in Hong Kong. A total of six spousal caregivers of persons diagnosed with dementia before the age of 65 participated in this study. Three major categories were identified: coming to terms with an unexpected diagnosis; multiple unanticipated and 'early' losses and finding positives and meaning. This study has highlighted the influence of sociocultural values on the spousal caregiving experience in young-onset dementia caregiving. The findings also have significant implications for the development of interventions to facilitate the spousal caregivers to accept and sustain their caregiving role. [ABSTRACT FROM AUTHOR]

This study explored the experience of young adults having a parent with young-onset dementia. In-depth interviews were undertaken with five participants aged between 23 and 36 years of age and these were analysed using interpretative phenomenological analysis. Participants were found to experience a number of stresses in relation to their parent's illness, many of which were linked to loss and guilt. Five main themes were identified related to relationship changes, shifts in roles and responsibilities, support for the non-affected parent, support for self and the impact of living with their own potential risk of dementia. These findings are discussed in relation to the existing literature and suggest that individuals with a parent with young-onset dementia have needs which service providers should consider in the wider context of young-onset dementia care. [ABSTRACT FROM AUTHOR]

Research shows that people with late-onset dementia and their relatives can benefit from using assistive technology (AT). Few researchers have investigated the use and utility of AT in everyday life for younger people with dementia (YPD) and their family carers. The aim of this study is to explore what characterised the implementation process when the AT was experienced as beneficial to the YPD and the family carer in their daily life. The qualitative longitudinal study followed 12 younger people (i.e. those under 65 years of age), who had recently been diagnosed with dementia and 14 of their family carers. In-depth interviews and observations during the process were conducted at the beginning, and were repeated every 3rd month for up to 12 months. The data were analysed, and the participants’ experiences further discussed on the basis of embodied, social- and everyday life-situated approaches, in order to provide a deeper understanding of the interactive processes involved in the trajectory. Five elements in the process were identified as important for the experience of usefulness and successful incorporation of AT. The AT had to: (1) be valuable by addressing practical, emotional, and relational challenges; (2) fit well into, or be a better solution for, habitual practice and established strategies; (3) generate positive emotions, and become a reliable and trustworthy tool; (4) be user-friendly, adaptable, and manageable; and (5) interest and engage the family carer. The study demonstrated the importance of understanding the use and utility of AT on the basis of embodied and social participation in daily life. The family carers played a significant role in whether or not, and in which ways, AT was absorbed into the everyday life practice of YPD. [ABSTRACT FROM AUTHOR]