Living with Young Onset Dementia: A Reconstruction of Social Agency

BackgroundCurrent physical activity literature does not distinguish between young (dementia diagnosed before 65) and late onset dementia despite differences between these groups such as age, being known to influence physical activity levels.ObjectiveThe primary aim was to compare objective physical activity levels between people with young onset dementia, late onset dementia, and age-matched control participants without dementia.MethodsThis cross-sectional analysis included four groups (young onset dementia [n = 23]; young onset control [n = 782]; late onset dementia [n = 30]; late onset control [n = 918]) of participants aged 49 to 76 (56% male) from the UK Biobank. Objective light intensity physical activity, moderate-vigorous intensity physical activity, sedentary behavior, and sleep were measured using 7-day wrist-worn accelerometry.ResultsPeople with young onset dementia did more light and moderate-vigorous intensity physical activity than those with late onset dementia, with these differences becoming nonsignificant when controlling for age. There were no significant differences between people with young onset dementia and the young onset control group. Comparatively, people with late onset dementia did less light intensity physical activity and spent more time sedentary and sleeping than the late onset control group.ConclusionsThis study highlights the distinct physical activity levels of people with young onset and late onset dementia. Future physical activity research should distinguish between young onset and late onset dementia. Such an approach will be important for producing findings that are more applicable for individuals diagnosed with dementia at all stages of life.

Background: Young onset dementia (YOD) is a diagnosis given when the neurocognitive process sets in before 65 years age. The YOD dementia process poses specific challenges related to financial issues, work and social demands, marriage, and parenthood, including losses and shifting roles, care responsibilities, as well as prospects for the future. Those challenges might account for the difference in awareness between YOD and late onset dementia (LOD). Awareness can be defined as the recognition of changes caused by deficits related to the disease process, which may include the ability to recognize a specific deficit, the emotional response to the difficulties presented and the ability to understand the impact of the disease in activities of daily living Objectives: This study is designed to investigate differences in awareness of cognitive functioning and health condition, functional activity impairments, emotional state, and social functioning and relationships among people with young onset (YOD) and late onset dementia (LOD); and examine associations between awareness and its domains with cognition, functionality, neuropsychiatric symptoms, social and emotional functioning and quality of life (QoL) in both groups. Methods: This is a cross-sectional design study. A group of 136 people with dementia and their respective caregivers (YOD = 50 and LOD = 86) were consecutively selected from an Alzheimer’s disease outpatient unit in Rio de Janeiro, Brazil. We assessed awareness of disease, dementia severity, cognition, functionality, neuropsychiatric symptoms, social and emotional functioning, and quality of life. Results: People with YOD were more aware of disease (total score), more aware of their cognitive functioning and health condition and of their functional activity impairments than people with LOD, even if this group was more severely cognitive impaired and had a worse level of functionality than LOD group. Besides, people with YOD had more neuropsychiatric symptoms than people with LOD. Multivariate linear regressions showed that functionality has a wide relationship to awareness for people with YOD. While neuropsychiatric symptoms and quality of life has a greater relation to awareness for people with LOD. Conclusions Different clinical variables are associated to different domains in YOD and LOD groups, reinforcing the heterogeneity of awareness in dementia.

BackgroundScientific research on palliative care in dementia is still underdeveloped. In particular, there are no research studies at all on palliative care issues in young onset dementia (YOD), although significant differences compared to late onset dementia (LOD) are expected. Most studies have focused on persons with dementia in long term care (LTC) facilities but have neglected persons that are cared for at home. We hypothesize that unmet care needs exist in advanced and terminal stages of YOD and LOD and that they differ between YOD and LOD.Methods/designThe EPYLOGE-study (IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany) aims to prospectively assess and survey 200 persons with YOD and LOD in advanced stages who are cared for in LTC facilities and at home. Furthermore, EPYLOGE aims to investigate the circumstances of death of 100 persons with YOD and LOD. This includes 1) describing symptoms and management, health care utilization, palliative care provision, quality of life and death, elements of advance care planning, family caregivers’ needs and satisfaction; 2) comparing YOD and LOD regarding these factors; 3) developing expert-consensus recommendations derived from the study results for the improvement and implementation of strategies and interventions for palliative care provision; 4) and communicating the recommendations nationally and internationally in order to improve and adapt guidelines, to change current practice and to give a basis and perspectives for future research projects. The results will also be communicated to patients and their families in order to counsel and support them in their decision making processes and their dialogue with professional caregivers and physicians.DiscussionEPYLOGE is the first study in Germany that assesses palliative care and end-of-life issues in dementia. Furthermore, it is the first study internationally that focuses on the specific palliative care situation of persons with YOD and their families. EPYLOGE serves as a basis for the improvement of palliative care in dementia.Trial registrationThe study is registered in ClinicalTrials.gov (NCT03364179; Registered: 6. December 2017.

BackgroundPeople with young onset dementia (YOD) have unique needs and experiences, requiring care and support that is timely, appropriate and accessible. This relies on health professionals possessing sufficient knowledge about YOD. This study aims to establish a consensus among YOD experts about the information that is essential for health professionals to know about YOD.MethodsAn international Delphi study was conducted using an online survey platform with a panel of experts (n = 19) on YOD. In round 1 the panel individually responded to open-ended questions about key facts that are essential for health professionals to understand about YOD. In rounds 2 and 3, the panel individually rated the collated responses in terms of their importance in addition to selected items from the Dementia Knowledge Assessment Scale. The consensus level reached for each statement was calculated using the median, interquartile range and percentage of panel members who rated the statement at the highest level of importance.ResultsThe panel of experts were mostly current or retired clinicians (57%, n = 16). Their roles included neurologist, psychiatrist and neuropsychiatrist, psychologist, neuropsychologist and geropsychologist, physician, social worker and nurse practitioner. The remaining respondents had backgrounds in academia, advocacy, or other areas such as law, administration, homecare or were unemployed. The panel reached a high to very high consensus on 42 (72%) statements that they considered to be important for health professionals to know when providing care and services to people with YOD and their support persons. Importantly the panel agreed that health professionals should be aware that people with YOD require age-appropriate care programs and accommodation options that take a whole-family approach. In terms of identifying YOD, the panel agreed that it was important for health professionals to know that YOD is aetiologically diverse, distinct from a mental illness, and has a combination of genetic and non-genetic contributing factors. The panel highlighted the importance of health professionals understanding the need for specialised, multidisciplinary services both in terms of diagnosing YOD and in providing ongoing support. The panel also agreed that health professionals be aware of the importance of psychosocial support and non-pharmacological interventions to manage neuropsychiatric symptoms.ConclusionsThe expert panel identified information that they deem essential for health professionals to know about YOD. There was agreement across all thematic categories, indicating the importance of broad professional knowledge related to YOD identification, diagnosis, treatment, and ongoing care. The findings of this study are not only applicable to the delivery of support and care services for people with YOD and their support persons, but also to inform the design of educational resources for health professionals who are not experts in YOD.

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. 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. 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. 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.

Background The gendered aspects of extraordinary demanding spousal caring for people with young-onset dementia have been scarcely researched. Aim To analyze spouses’ experiences of the meaning, content, and effort of intensive caring for spouses/partners with young-onset frontotemporal dementia (YO-FTD), concentrating on a female perspective. Method A qualitative Norwegian study using narrative interviews with 10 wives and 6 husbands were conducted in 2014 and 2015. Findings The analysis resulted in four gendered main themes: Different caregiving periods, Distancing: experiencing a transformed spouse and relationship, Social isolation, and Needing assistance and relief. A case analysis of wives’ and men’s stories was applied, especially focusing on a wife’s story, to examine the detailed interrelationships between life situation, caring demands, experiences, and reactions. Spousal care is influenced by gendered caring norms and roles. The study finds marked differences between wives and husbands in the meaning, content and sustainability of care, and needs for support vary. Wives endured more stress longer than husbands, with a greater emotional impact and negative health consequences, and their needs are more easily neglected. Husbands presented their needs more efficiently and obtained public relief earlier. Conclusion Women may need more support earlier during different stages of caring for a spouse with YO-FTD. They need gender sensitive person-centered support to live their own lives and preserve their selves.

There is an increase in prevalence of young onset dementia (YOD). The specific problems among YOD patients and levels of caregiver burden (CB) in this group warrants further evaluation. To evaluate and compare level of CB in YOD and late onset dementia (LOD). Also, we sought to understand the specific factors, such as neuropsychiatric symptoms, that may affect the levels of caregiver burden in the YOD group. Patient-caregiver dyads with YOD and LOD were recruited from a tertiary neurology center. Levels of CB between YOD and LOD were compared among 183 patient-caregiver dyads. CB was quantified using the Zarit Burden Inventory (ZBI). Neuropsychological evaluations as well as the Neuropsychiatric Inventory were performed. Factors that influenced level of CB in YOD group was investigated with regression analyses. There were 57 YOD and 126 LOD dyads. Caregivers of YOD subjects reported significantly higher levels of burden compared to caregivers of LOD subjects (ZBI: 17.3 versus 13.94; p = 0.015). 52.6% of YOD caregivers reported a high caregiver burden. When compared to caregivers of LOD, the odds of a caregiver of YOD reporting high caregiver burden was 2.34 (95% CI: 1.22-4.49: p = 0.010). YOD dyads with a high caregiver burden had significantly higher neuropsychiatric inventory scores. Risk factors for high caregiver burden in YOD included family history of dementia and behavioral symptoms including disinhibited behavior, delusions, and apathy. Targeted support for caregivers of patients with YOD is needed to address the higher CB in this group.

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.

Families living with younger onset dementia face unique social challenges, which services do not currently address. There is a gap in understanding the experiences of families affected by younger onset dementia, including the interactions and relationships within the family units, and with existing services and supports. In this qualitative research study, semi-structured interviews were conducted across Australia with seven health and social care providers, five persons living with younger onset dementia, six spouse/carers, and 17 children. A thematic analysis was conducted using a theoretical lens drawn from the combined perspectives of the social model of disability and family systems-illness model. Two central themes emerged in the data: (1) Understanding the social demands on the family - lifecycle challenges living with younger onset dementia from a social and family context; and (2) Interactions of health and social care providers with families living with younger onset dementia - opportunities and challenges in providing support and services geared to a whole family approach. In order to provide families for those living with younger onset dementia with optimal assistance and support, co-creation of a family-focused services model is proposed. Its purpose is to support effective therapeutic interactions and service development among service users, service providers, and stakeholders.

AimDespite an estimated 40 000 people diagnosed with young onset dementia (YOD) in the UK, there is a general lack of awareness of the condition when compared with late onset...

Ethnic disparities in the uptake of anti‐dementia medication in young and late onset dementia

Gratitude is a character strength that predicts life satisfaction and has been found to be meaningful for older people living with dementia. The age someone develops symptoms of dementia impacts how people relate to and experience dementia. Young onset dementia is the development of dementia symptoms before the age of 65, and can present unique challenges. Gratitude has emerged serendipitously in young onset dementia research in the context of coping. Given the unmet need for tailored support for people with young onset dementia, exploring factors that may contribute to people with young onset dementia's well-being, such as gratitude, is important. This study therefore aimed to explore the meanings and experience of gratitude for people living with young onset dementia. Nine people living with young onset dementia each took part in a semi-structured interview that had been developed in collaboration with a patient and public involvement group. This was an exploratory qualitative study, using Interpretative Phenomenological Analysis. Two overarching themes and six subthemes were developed to capture how participants cultivated and experienced gratitude, in order to live well. The theme 'Gratitude as a cultivated approach to life' included: 'Acknowledging the challenges', 'Slowing down allows me to savour the moment', and 'Choosing a grateful mindset'. The second theme 'Interpersonal gratitude' included: 'Feeling part of something bigger', 'Feeling seen and supported', and 'Sharing the thank-yous'. This study demonstrated that gratitude was a meaningful concept for people living with young onset dementia and had a role in fostering their well-being. Lived experiences of young onset dementia were connected to cultivating gratitude and this process often involved participants making an active choice to experience gratitude. Experiences of gratitude were largely interpersonal, with felt and expressed gratitude for relationships and communities, highlighting the importance of social support.

BackgroundPeople with young onset dementia face unique challenges. Notably, at time of symptom presentation, many people affected by young onset dementia are still employed with significant financial obligations. The aim of this study was to explore the specific impact that young onset dementia has on continued employment and finances and to identify ways to optimise post-diagnostic approaches in this regard.MethodsPurposive sampling, with a maximum variation technique, was used to recruit a small but diverse range of people with young onset dementia in Ireland. In-depth semi-structured interviews were conducted, and data were analysed using Reflexive Thematic Analysis. In total, 22 interviews were conducted with 10 people with young onset dementia and 12 spouses and children. Two themes were constructed: impact of young onset dementia on (I) employment and (II) finances.FindingsParticipants’ lived accounts showed the devastating effect of a diagnosis of young onset dementia on working life, and the resultant financial, social, and psychological consequences. Participants reported having to leave paid employment early, reported losing contracts and retiring on medical grounds. There were financial implications caused by loss of income, and many additional expenses owing to dementia were incurred. In some families, spouses had to take up employment at the same time as a caring role to mitigate the loss of income, and young children were anxious at the resultant occupational and financial tensions.ConclusionPeople diagnosed with young onset dementia encounter significant challenges associated with employment, and individual and family finances. There is a need for more specific information and guidance from healthcare professionals around employment rights, income support and welfare benefits and the pension status for this group of people. Additionally, healthcare professionals should be cognisant of the additional financial burden people face in young onset dementia when advising on services which incur out-of-pocket costs.

The number of patients with young onset dementia (YOD) (first symptoms beginning before the age of 60 years) is estimated around 5,000 in France. On account of the usual severity of behavioral symptoms in these patients, the need for cognitive-behavioral specialized unit (UCC) is expected. To determine the number and characteristics of YOD patients cared for in UCC in France during the year 2013. A specific questionnaire was sent to the 84 French UCC. The questionnaire was completed by 55 UCC (65%), whose 33 received 179 YOD patients. The diagnosis was Alzheimer's disease in 50% of the cases and frontotemporal dementia in 30%. The main reasons for the hospitalization in UCC were the severity of behavioral symptoms in 86% of cases, the need to alleviate the caregiver burden in 31% and the waiting for a place in a nursing home in 23%. Mean duration of hospitalization was 40.4 ± 20.5 days. At the end of hospitalization 51% of the patients returned to their original living accomodation and 39% entered into a nursing home. The main reason of YOD patients hospitalization reject was the care team's fear in the UCC without experience. The severity of the behavioral troubles was the major issue while the necessary ethical reflection raised by the YOD patients management was a positive aspect. The teams rated how ready do they feel about taking care of YOD patients on a scale from 0 to 100, the median was 35. The welcoming of YOD patients in UCC is necessary, however the severity of the behavioral troubles and the care teams fear prompt to set up specific education and to increase of the number of staff for YOD patients management.

Young onset dementia (YOD) presents in individuals who are economically productive and socially active. While the cost related to dementia in the elderly has been widely studied, the cost related to YOD is largely unknown. To study the economic burden of community dwelling YOD in relation to late onset dementia (LOD) and cost of YOD based on etiology. In this prospective cross-sectional study of 255 patients attending a tertiary neurology center, data on economic burden, clinical features, and caregiver burden were collected using structured financial questionnaire, standard cognitive and neuropsychiatric measures, and Zarit caregiver burden scale. Cost components were grouped into those relating to direct medical costs, direct non-medical costs, and those related to indirect costs. Cost was also categorized based on etiology of YOD. The mean age at symptom onset in the YOD and LOD cohort was 57.0 (SD 5.1) and 75.0 (SD 5.9) years, respectively. The median annual cost for patients with YOD was almost twice that of LOD (USD 15,815 versus USD 8,396). Indirect cost contributed heavily to cost related to YOD. Even when grouped by dementia etiology, YOD patients with Alzheimer's disease, frontotemporal dementia (FTD), and vascular dementia had higher cost compared to their elderly counterparts. Young onset FTD had the highest cost. 43.2% of YOD reported loss of employment due to dementia, which was significantly higher than that in LOD (2.4%). Patients with YOD have a high economic burden. Young patients with FTD have the highest cost followed by vascular dementia and Alzheimer's disease.