Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review

Mayrhofer, Andrea; Mathie, Elspeth; McKeown, Jane; Bunn, Frances; Goodman, Claire

doi:10.1080/13607863.2017.1334038

Cited by 62 publications

(103 citation statements)

References 44 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The use of specialist services such as memory clinics is regarded as being more effective in providing effective post‐diagnostic support (Kelly & Innes, ; Prince et al, ; Robinson, Tang, & Taylor, ). Diagnosed individuals view services as valuable if they are able to signpost on to community support initiatives (Mayrhofer, Mathie, McKeown, Bunn, & Goodman, ). DMP do not need to fulfil this role: diagnosed individuals appreciate dedicated and sensitive project workers who facilitate referrals to social support (Kelly & Innes, ).…”

Section: Discussionmentioning

confidence: 99%

What next? Experiences of social support and signposting after a diagnosis of dementia

Hagan

2020

Health Soc Care Community

View full text Add to dashboard Cite

The experience of being diagnosed with dementia can be shocking. This may be compounded if individuals feel that there is a lack of signposting onto further avenues of support following diagnosis. This study, then, examines how social support is promoted in the diagnostic process. Using purposive sampling and a grounded theory approach, semi‐structured interviews were conducted with 13 members of a dementia empowerment group in Northern Ireland, discussing both their experience of diagnosis and also their subsequent group membership. Respondents reported both positive and negative experiences of diagnosis. Feelings of shock and bewilderment accompanied this process. Only one was able to identify a direct link between a medical professional and referral to the empowerment group, others being referred by other health professionals or dementia navigators. The study indicates that, due to disorienting feelings, one diagnostic consultation is insufficient to explain both the diagnosis and offer follow‐up support. Therefore, more explicit links to navigators or other services need to be made at the point of diagnosis to prioritise information regarding opportunities for social engagement for those being diagnosed.

show abstract

Section: Discussionmentioning

confidence: 99%

What next? Experiences of social support and signposting after a diagnosis of dementia

Hagan

2020

Health Soc Care Community

View full text Add to dashboard Cite

show abstract

“…They are generally fit and in good physical health. This, together with their marked age difference, makes the integration of those with YOD into mainstream dementia services extremely difficult [2,16,17]. This is because there are limited age-appropriate services available for people living with YOD.…”

Section: Younger Onset Dementiamentioning

confidence: 99%

Collaborative Futures

Bell

Leong

2019

Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems

View full text Add to dashboard Cite

Designing new technologies to support the lived experience of dementia is of increasing interest within HCI. While there is guidance on qualitative research methods to use in areas such as dementia, there is a need for more appropriate ways to research in the younger demographic. In Younger Onset Dementia (YOD), the circumstances and experiences are markedly different from dementia in the later stage of liferequiring a different approach. This paper presents insights into the methods and approaches used in a fieldwork with five people living with YOD; where they engaged as coresearchers in a co-directed inquiry into their lived experiences. Through this, we make a number of methodological contributions to HCI and Participatory Action Research (PAR) for research in the YOD setting. This includes productive approaches that are sensitive, respectful and empowering to the participants. It also extends current approaches to using probes in HCI and dementia research.

show abstract

“…Research suggests that carers of people with YOD require more care support due to the higher levels of behavioural disturbances than in late-onset dementia [3]. However, growing evidence suggests that services are often maladapted to the needs and wishes of people living with the condition and their carers ( [8,9,16,20,21]; 2018). The barriers to post-diagnostic services span from insufficient information [16] to not receiving support and help at the right time [10].…”

Section: Introductionmentioning

confidence: 99%

“…The barriers to post-diagnostic services span from insufficient information [16] to not receiving support and help at the right time [10]. In particular, services often fail to provide sufficient support because of temporary and time-limited funding (for example by local councils) and thus often discontinue [20]. Whilst there is a growing literature on the shortcomings of services for people with YOD and their carers from the perspectives of service users, it appears that there is little to no evidence currently on staff perspectives on what should be adapted to accommodate and support service users better.…”

Section: Introductionmentioning

confidence: 99%

Evaluating a young-onset dementia service from two sides of the coin: staff and service user perspectives

Giebel

Eastham

Cannon

et al. 2020

BMC Health Serv Res

View full text Add to dashboard Cite

Background: People with young-onset dementia (YOD) can often struggle getting the right treatment. This is because of their frequently different characteristics and needs compared to people with late-onset dementia. The aim of this project was to assess a memory service for its adaptation to the needs and wishes of people with YOD and their carers. Methods: This project evaluated a memory service in the North West of England by performing two focus groups with clinical staff and six semi-structured interviews with people with YOD and carers. The focus groups took place on site and lasted one hour each. People with YOD and their carers were identified via the memory clinics caseload and via the local Alzheimer's Society charity organisation. Both focus groups and interviews were audio-recorded and transcribed, and data were analysed using thematic analysis. The public (a person living with YOD and his carer) were involved from the design stages of the project through to the analysis and dissemination. Results: Eleven members of staff with different clinical backgrounds participated in the focus groups and six interviews were held with people with YOD and their carers. Both indicated that whilst the diagnostic process is relatively well conducted at the service, the post-diagnostic service has many gaps. These include limited postdiagnostic support by the service, better enabling peer support, as well as providing meaningful activities, as some activities provided might be more suitable to older adults with dementia. Conclusions: Post-diagnostic services and support for people with YOD and their carers need to be improved. The next step will be to implement the findings from this service evaluation in practice and improve service satisfaction and relevance to people with YOD.

show abstract

Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review

Cited by 62 publications

References 44 publications

What next? Experiences of social support and signposting after a diagnosis of dementia

What next? Experiences of social support and signposting after a diagnosis of dementia

Collaborative Futures

Evaluating a young-onset dementia service from two sides of the coin: staff and service user perspectives

Contact Info

Product

Resources

About