Nobody asked me how I felt: experiences of adult children of persons with young-onset dementia

2014 ◽  
Vol 26 (12) ◽  
pp. 1935-1944 ◽  
Author(s):  
Maria Lage Barca ◽  
Kirsten Thorsen ◽  
Knut Engedal ◽  
Per Kristian Haugen ◽  
Aud Johannessen
Keyword(s):  
Social Services ◽  
Adult Children ◽  
Qualitative Interviews ◽  
Research Field ◽  
Young Onset ◽  
Health And Social Services ◽  
The Family ◽  
Living Together ◽  
Centered Care ◽  
Young Onset Dementia

ABSTRACTBackground:There are few studies of young persons (<65 years old) with dementia, and the situation of their children has been a neglected research field. The aim is explore how adult children of a parent with young-onset dementia have experienced the development of their parents’ dementia and what needs they have for assistance.Method:Qualitative interviews with 14 informants (aged 20–37 years; 12 daughters, 2 sons) during 2011 were conducted and analyzed thematically.Results:The informants experienced great burdens and felt neglected during the development of their parents’ dementia, both by their family and by health and social services. They emphasized a need to be seen as individuals, with their experiences, feelings, and personal needs for assistance. The stresses experienced during the development of parental dementia seemed to increase conflicts in the family. There were variations in reactions between children, depending on age, gender, family structure and relationships, responsibilities, personal relations with both parents, and whether there was an adult primary caregiver. The length of time living together with the parent with dementia seemed to increase the stress and burden to the children. They expressed a great need for information and support.Conclusion:The findings strengthen the notion of the need for family-oriented support, combined with person-centered care for the children according to their needs. In addition, group meetings and contact with other young people in the same stage of life could be of interest for some.

Examining the needs of persons experiencing homelessness: Bringing the voice of lived experience to policy priorities

2021 ◽  
Vol 1 (1) ◽  
pp. 14-31
Author(s):  
Elise Smith ◽  
Piper Moore ◽  
Sarah Canham
Keyword(s):  
Lived Experience ◽  
Social Services ◽  
Salt Lake ◽  
Qualitative Interviews ◽  
Basic Needs ◽  
Federal State ◽  
Physical And Mental Health ◽  
Health And Social Services ◽  
State And Local ◽  
Services And Supports

Policy related to homelessness varies across federal, state, and local levels influencing access to health and social services among persons experiencing homelessness. With a diversity of community stakeholders comes a diversity of ideas about which health and social services to provide and prioritize. Despite the unique insights PEH are able to offer on their own situations, their voices often remain excluded from research and policy. The aim of the current study was to identify the basic needs and health and social service priorities of PEH, to incorporate these voices into policy decisions and prioritization. Fifteen participants age 18 and older who had any experience of homelessness in Salt Lake Countyparticipated in in-depth qualitative interviews between February and March 2020. Open-ended questions enabled the interviews to naturally progress and focus on what was most relevant to participants and their experience. Data were categorized into the services and supports identified as the most needed by PEH and to help lift people out of homelessness: 1) Housing and shelter, 2) Income and employment, 3) Transportation, 4) Food, 5) Physical and mental health services, and 6) Social support. We describe the needs, challenges, and solutions as identified and narrated by study participants. Findings offer critical insight into how the homelessness crisis should be approached by policymakers as the ways in which PEH understand and utilize the system of available resources and supports must align with their abilities and realities. Without these in-depth discussions with PEH about how they understand and meet their basic needs, there will be ongoing gaps in service delivery and mismatches in the attempts made to serve this population.

scholarly journals Custos Associados à Prestação Informal de Cuidados a Pessoas com Demência

2020 ◽  
Vol 33 (13) ◽  
Author(s):  
Cátia Luz Pires ◽  
Natália Duarte ◽  
Constança Paúl ◽  
Oscar Ribeiro
Keyword(s):  
Social Services ◽  
Informal Care ◽  
Family Income ◽  
Health Sector ◽  
Good Method ◽  
Care Recipient ◽  
Health And Social Services ◽  
Continuous Care ◽  
The Family ◽  
Use Of Services

Introduction: From a perspective that considers the costs borne by the informal caregiver and the care-recipient, this study quantifies and values the use of health and social services, and the time dedicated to caregiving in dementia situations.Material and Methods: Sociodemographic information and use of services was obtained from 123 caregiving dyads. Costs with informal care were evaluated and valued considering the Health Sector (health services), Patient/Family Sector (time of caregiving) and Other Sectors (social services, continuous care, other private services). Costs with health and social services considered the paying person; the Patient/Family Sector was valued through the proxy-good method. The costs were calculated per month and the value for 100 dyads.Results: The total cost of informal care was €61 982.2/month per 100 dyads. The Patient/Family Sector value (€44 030.0/month) contributed with 71.0% of the total costs, Other Sectors with 20.8% (€12 887.4/month), and the Health Sector with 8.2% (€5064.8/month).Discussion: The obtained value per dyad (€619.8/month) represents 77.5% of their monthly income (median = €800.0; interquartile range = 679.0), which can limit the decision of continuing the care provision at home. Considering the values presented for this specific sample, it is estimated that the exemption of fees in the Health Sector and/or benefits in social services may contribute to a downward estimate of the costs.Conclusion: Regardless of the complexity in estimating the costs associated with informal caregiving in dementia, this paper provides some insights on the burden they can represent for the family income.

Partnership working between young carers project and social services

2013 ◽  
Vol 16 (3) ◽  
pp. 50-64
Author(s):  
Anna Heyman
Keyword(s):  
Social Work ◽  
Social Services ◽  
Family Relationships ◽  
Qualitative Interviews ◽  
Theory And Practice ◽  
Young Carers ◽  
Social Work Theory ◽  
The Family ◽  
The Impact

This article draws on in-depth qualitative interviews with ten practitioners who specialise in working with young carers, to examine how members of the emerging profession of ‘young carers’ worker’ view their partnerships with social services. It focuses particularly on one case study area (Town Z), where partnerships between social services and the voluntary sector around young carers were relatively highly developed. It explores the practitioners’ comments about the impact of their organisations’ partnerships with social services on their work. This is done in the context of their conceptualisations of care and family relationships. In particular, the themes of identifying young carers and working with the family as a whole are discussed, and young carers’ workers views are compared to the conceptualisations that come across in literature from both disability studies and social work perspectives. It is concluded that young carers’ workers conceptualisations of care and disability do differ markedly from the perspectives that appear to dominate both social work theory and practice, and that this impacting on how the former view their partnerships with the latter.

The impact of young onset dementia on the family: a literature review

2010 ◽  
Vol 23 (3) ◽  
pp. 356-371 ◽  
Author(s):  
Emma Svanberg ◽  
Aimee Spector ◽  
Joshua Stott
Keyword(s):  
Literature Review ◽  
Literature Search ◽  
Service Development ◽  
Systematic Literature Search ◽  
Young Onset ◽  
People With Dementia ◽  
The Family ◽  
Young Onset Dementia ◽  
The Individual ◽  
The Impact

ABSTRACTBackground: The needs of younger people with dementia have become increasingly recognized in service development. However, little is known about the impact of a diagnosis of young onset dementia on people aged under 65 years and their families. This paper reviews the literature on the experiences of younger people with dementia and their families in the U.K., and outcomes for carers.Methods: Twenty-six studies, encompassing a variety of themes concerning this population, were reviewed following a systematic literature search.Results: Results are divided into the impact on the individual and the impact on the family, specifically carer outcomes and the impact on children.Conclusions: The studies reviewed reveal a number of negative outcomes for the individual and carers, and highlight the need for further research.

Constraints and ethical tensions in the area of young-onset dementia

2019 ◽  
Vol 28 (21) ◽  
pp. 1380-1386
Author(s):  
Caroline Kilty ◽  
Corina Naughton ◽  
Aine de Roiste
Keyword(s):  
Health Professionals ◽  
Interpretative Phenomenological Analysis ◽  
Qualitative Interviews ◽  
Models Of Care ◽  
Community Services ◽  
Young Onset ◽  
Timely Diagnosis ◽  
Person Following ◽  
Health And Social Care ◽  
Young Onset Dementia

Background: young-onset dementia (under age 65) varies in many respects to typical aged dementia. Health professionals are centrally involved in supporting individuals and families to cope with the unique challenges that young-onset dementia (YOD) brings. Aims: this study aimed to explore professionals' perceptions of the key challenges faced by people living with YOD and their families, and how they provide support to this group. Methods: qualitative interviews were conducted with nine health professionals from a range of health and social care contexts. Data were analysed using interpretative phenomenological analysis. Findings: interviewees reported significant challenges in trying to enact support for people with YOD, and families. Particular challenges relate to delays in accessing timely diagnosis, and difficulty in accessing relevant, age-appropriate supports. Interviewees experienced ethical tensions working in this area; interviewees were keen to enact support for the person following diagnosis, but felt constrained by service options that were not relevant or readily accessible to the person, and in some instances, traditional dementia services added to, rather than lessened the stress experienced by those involved. Conclusion: dementia and health services should be cognisant of the unique challenges of YOD, and models of service provision should aim to respond accordingly. Nurses and other health professionals should be afforded the necessary structures to support people living with YOD. This relates to dedicated YOD models of care, specifically timely diagnosis, post-diagnosis support and community services that enhance personhood and resilience.

Sign in / Sign up

Export Citation Format

Share Document