Feeling useful and engaged in daily life: exploring the experiences of people with young-onset dementia

Vliet, Deliane van; Persoon, Anke; Bakker, Christian; Koopmans, Raymond T.C.M.; Vugt, Marjolein E. de; Bielderman, Annemiek; Gerritsen, Debby L.

doi:10.1017/s1041610217001314

Cited by 29 publications

(31 citation statements)

References 30 publications

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“… 32 33 The often-lengthy period leading up to the point at which a person recognises that they need to seek help is the first of these. In line with other studies, 34 35 for a number of our participants, the initial signs that something was wrong were not directly related to memory problems, but to wider and more general cognitive anomalies or behavioural changes, with eight participants first noticing problems while at work. Basic memory issues such as increasing forgetfulness could be a significant element, but might well only have been one of a variety of sporadic perturbations in spatial awareness or episodes of general confusion.…”

Section: Discussionsupporting

confidence: 91%

Understanding the needs and experiences of people with young onset dementia: a qualitative study

et al. 2018

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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 dementia. The aim of this study was to explore the experiences and needs of people living with YOD (younger than 65 years) and gain an understanding of the issues that impact on them.SettingParticipants’ homes, support group premises or university rooms.Participants14 people with a diagnosis of YOD from a northern UK city.DesignSemistructured, in-depth interviews were audio recorded, transcribed and analysed cross-sectionally following principles of interpretative phenomenological analysis.ResultsFour superordinate themes are reported on ‘process of diagnosis’, ‘the impact of living YOD’, ‘needs of people with YOD’ and ‘living well with YOD’. Nine subordinate themes captured participant experiences of developing cognitive difficulties, after being diagnosed with YOD, and subsequently living with the condition. Key issues that emerging included a lack of general awareness of YOD; how this can delay help seeking; commonalities in prediagnosis trajectories; retrospective understanding of prediagnosis symptom patterns; the difficulties of obtaining a firm diagnosis; the importance of face-to-face support and difficulties associated with daily living. Participants also described the emotional and psychological impact of the condition and the importance of formal and informal support networks.ConclusionsPeople who have a diagnosis of YOD regard themselves as distinct from older people with dementia. Despite similar symptoms, the context in which they experience the condition creates a range of distinct psychosocial concerns not commonly well addressed by health and social care services. As awareness of YOD continues to grow, the development (or adaptation) of services that take into account the idiosyncratic needs of people with YOD should be addressed.

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Section: Discussionsupporting

confidence: 91%

Understanding the needs and experiences of people with young onset dementia: a qualitative study

et al. 2018

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“…Dementia-related functional impairments may be reflected in poorer quality of life through reduced self-efficacy, self-esteem, independence, and sense of autonomy [11]. However, the comprehensive and highly subjective concept of quality of life encompasses dimensions of physical, emotional, psychosocial, and environmental well-being, posing challenges to objective measurement.…”

Section: Introductionmentioning

confidence: 99%

Quality of Life in People with Young-Onset Dementia: A Nordic Two-Year Observational Multicenter Study

Hvidsten

Engedal

Selbæk

et al. 2019

JAD

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Background: Cross-sectional studies of quality of life (QOL) of people with young-onset dementia show diverging results. Objective: To identify factors associated with QOL in people with young-onset Alzheimer's (AD) and frontotemporal dementia (FTD) and explore development in QOL over a two-year period, including differences between the two subtypes. Methods: A two-year cohort study of 88 community-dwelling people with young-onset AD and FTD recruited from Nordic memory clinics. QOL was assessed using the proxy version of the Quality of Life -Alzheimer's Disease questionnaire, dementia severity was rated with the Clinical Dementia Rating scale, depressive symptoms by the Cornell Scale for Depression in Dementia, awareness with the Reed anosognosia scale, and needs using the Camberwell Assessment of Needs in the Elderly questionnaire. Factors associated with QOL and development in QOL over time were explored with growth mixture model trajectories and mixed model analyses. Results: We identified two groups of people following trajectories with better (n = 35) versus poorer (n = 53) QOL. People with more depressive symptoms at baseline had higher odds of belonging to poorer QOL group, OR 1.2 (CI 1.1; 1.5, p = 0.011). Having Alzheimer's disease was associated with significantly better QOL (p = 0.047 at baseline, p = 0.009 at T1 and p = 0.033 at T2). Increasing number of unmet needs was significantly associated with poorer QOL at baseline (p = 0.007), but not later in follow-up. Conclusion:Early assessment and treatment based on dementia subtype, depression, and individual needs may enhance quality of life in young-onset dementia.

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“…Questions focused on participants’ experiences of the onset of their dementia, the impact of the diagnosis on themselves and their family, plus their future expectations of living with dementia.This research used an application of the Grounded Theory (GT) method developed by Glaser and Strauss (2012).Roach P, Drummond N & Keady J, 2016 [84]To develop deeper understanding of the family experience of transition in early-onset dementia and to develop a representative model of this experience N = 9 persons with early onset dementia and their family members (11)AD (7), mixed (1), posterior cortical atrophy (1)Age range: 58–68 yearsWomen: 0CanadaIndividual, initial and follow-up semi-structured interviews.Data were analyzed in accord with a framework approach to qualitative data analysis by Ritchie and Spencer.Rostad D, Hellzen O & Enmarker I, 2013 [85] To gain understanding of the lived experience of younger persons with dementia (< 65 years) who lived at home and suffered with early onset, and the meaning that could be found in their experiences. N = 4 persons diagnosed with dementia living in their home.NorwayIndividual, narrative individual interviews in a conversational style with broad open-ended questions were used.Phenomenological hermeneutic approach to the analysis in line with Lindseth and Nordberg.Sandberg L, Rosenberg L, Sandman P-O & Borell L, 2017 [86] T o explore and better understand how people with dementia, living at home,experience risks in their daily life and how they handle these situations.N = 12 persons with mild-to-moderate dementia, living in wn homeAD (9), Vascular dementia (2), Levy Body (1)Mean age: 77 years (range 67–87)Women 50%Living with someone: 66.6%SwedenSemi-structured individual interviews with open-ended questionsThe interviews were analysed in steps using a qualitative content analysis approach in line with Granheim & Lundman.Sharp BK, 2017 [19]To describes how people with dementia perceive their experiences of stress, and how people with dementia cope with the stress they experience? N = 21 persons with dementia living in own homeAD (13), Vascular dementia (7),Mixed (1)Mean age: 65.9Women: 52.3%Living with someone:66.7%UKFocus groups.The study is an interpretative phenomenological analysis (IPA) in accordance with Smith, Flowers, & Larkin.NVivo Qualitative Data Analysis program was used.Sixsmith A & Gibson G, 2007 [87] To study: the role and importance of music in the lives and activities of the participants, the benefits they derived from music and music-related activities N = 26 persons diagnosed with dementia living in their home (16) or staying in care homes (10) and their family caregivers.Age: 62–96 yearsWomen: 69.2%Living with someone: 70%UKIndividual interviews in their natural setting, at home (16–18) and in the care homes (8–10) were performed. Open ended interviews, which were loosely structured.Observational data from private home settings were gathered.Stephan A, Bieber A, Hopper L, Joyce R, Irving K. Zanetti O, Portolani E, Kerpershoek L, Verhey F, de Vugt M, Wolfs C, Eriksen S, Røsvik S, Marques MJ, Gonçalves-Pereira M, Sjölund BM, Jelley H, Woods B & Meyer G, 2018 [88]Explore the perspectives of people with dementia, their informal carers and h...…”

Section: Methodsmentioning

confidence: 99%

Balancing the struggle to live with dementia: a systematic meta-synthesis of coping

Bjørkløf¹,

Helvik

Ibsen³

et al. 2019

BMC Geriatr

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BackgroundPeople with dementia describe experiences of loss that threaten their autonomy and ability to contribute to society. They often have difficulties with orientation, loss of roll function, and fear about the future, and need help from others. An increasing body of literature also focuses on how people with dementia search for meaning and maintaining of quality to life, and how they find strategies to live with dementia. A review of the scientific literature on coping and dementia is warranted and can help to advice and inform healthcare personnel and decision makers on how they can support and plan for appropriate healthcare services for people with dementia. The aim of this systematic meta-synthesis was therefore to interpret and synthesize knowledge regarding people with dementia’s experience of coping.MethodsWe conducted a systematic, computerised search of Medline, Embase, Cinahl Complete, PsycINFO and Age Line combining MeSH terms and text words for different types of dementia with different descriptions of experience. Studies comprised 1) a sample of people with dementia, 2) a qualitative interview as a research method and 3) a description of experiences of coping were included. The search resulted in 7129 articles, of which 163 were read in full text, 80 were excluded due to the exclusion criteria or low quality according. The analysis was conducted in line with qualitative content analyses.ResultsThis interpretative qualitative meta-synthesis included 74 articles of good quality encompassing interviews with 955 persons with dementia. The material revealed two main resources of coping: (1) Humour and (2) Practical and emotional support, and four overall strategies in which people with dementia cope with the challenges they experience: (1) Keep going and holding on to life as usual; (2) Adapting and adjusting to the demands from the situation; (3) Accepting the situation; and (4) Avoiding the situation A comprehensive understanding of the categories led to the latent theme: Balancing the struggle of living with dementia.ConclusionThis meta-synthesis indicates that people with dementia cope in different ways and using several parallel strategies. This insight is essential in dementia care to facilitate a supportive environment.

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Feeling useful and engaged in daily life: exploring the experiences of people with young-onset dementia

Abstract: It is important for people with YOD to have the opportunity to feel useful; especially in the early stages of the condition. Caregivers should be educated in ways to enhance a sense of usefulness and engagement in daily life for people with YOD.

Cited by 29 publications

References 30 publications

Understanding the needs and experiences of people with young onset dementia: a qualitative study

Understanding the needs and experiences of people with young onset dementia: a qualitative study

Quality of Life in People with Young-Onset Dementia: A Nordic Two-Year Observational Multicenter Study

Balancing the struggle to live with dementia: a systematic meta-synthesis of coping

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