The nature of positive post-diagnostic support as experienced by people with young onset dementia

Stamou, Vasileios; Fontaine, Jenny La; O’Malley, Mary; Jones, Bridget; Gage, Heather; Parkes, Jacqueline; Carter, Janet; Oyebode, Jan R.

doi:10.1080/13607863.2020.1727854

Cited by 34 publications

(66 citation statements)

References 30 publications

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“…As reported, for one family, having been awarded NHS Continuing Care made all the difference. Similar findings were reported by Stamou et al (2020).…”

Section: Discussionsupporting

confidence: 92%

“…Contributing factors include a greater likelihood of rare dementias (Harding et al, 2018), which cause a range of different symptoms and consequently unpredictable illness progression in younger onset (Kilarski et al, 2015). An unexpected diagnosis received 'out of time' (Greenwood & Smith, 2016) and premature loss of employment and income present a significant challenge to many because of age (Cations et al, 2017;Gibson et al, 2014;Stamou et al, 2020). Literature acknowledges financial impact (Galvin et al, 2017;Johannessen & Möller, 2013;Kochovska et al, 2018;Roach & Drummond, 2014), but research on this topic is lacking (Wheeler et al, 2015).…”

Section: Introduction and Backg Roundmentioning

confidence: 99%

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Understanding the financial impact of a diagnosis of young onset dementia on individuals and families in the United Kingdom: Results of an online survey

Mayrhofer

Greenwood

Smeeton

et al. 2021

Health Soc Care Community

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Although literature on postdiagnostic support for people affected by young onset dementia acknowledges financial concerns, this topic has remained underresearched.The aim of this study was to explore the financial impact of a diagnosis of young onset dementia on individuals and families. An online survey, comprising binary yes/ no, multiple-response and open-ended questions, was codesigned with people living with young onset dementia. The survey was promoted via networks and online platforms. Data were collected from August to October 2019. Survey respondents across the United Kingdom (n = 55) who had received a diagnosis of young onset dementia were aged between 45 and 64, were at different stages of dementia and had been diagnosed with thirteen different types of dementia. Of the 55 respondents, 71% (n = 39) had received assistance from family members when completing the survey. The main financial impact of a diagnosis of young onset dementia resulted from premature loss of income and reduced and often deferred pension entitlements. In some cases, care-costs became unaffordable. Lack of clarity of processes and procedures around needs assessments, carers' assessments and financial assessments by different organisations resulted in some families having to ask for legal advice and, in some cases, involved lengthy appeal processes. Future research needs to involve Adult Social Care and Third Sector organisations to help codesign and test financial management interventions to support people affected by this progressive health condition.

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“…As reported, for one family, having been awarded NHS Continuing Care made all the difference. Similar findings were reported by Stamou et al (2020).…”

Section: Discussionsupporting

confidence: 92%

Section: Introduction and Backg Roundmentioning

confidence: 99%

Understanding the financial impact of a diagnosis of young onset dementia on individuals and families in the United Kingdom: Results of an online survey

Mayrhofer

Greenwood

Smeeton

et al. 2021

Health Soc Care Community

View full text Add to dashboard Cite

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“…Evidence suggests that improving the patient experience is linked to improvement in performance and systems within clinical practice ( Schlesinger et al, 2015 ) but equally as important it increases individual autonomy and empowerment to maintain independence ( Stamou et al, 2020 ). The results presented here support this view by clearly demonstrating that while both the efficiency and practicalities of the diagnostic process were important, participants equally valued feeling listened to, informed and supported.…”

Section: Resultsmentioning

confidence: 99%

Receiving a diagnosis of young onset dementia: Evidence-based statements to inform best practice

O’Malley¹,

Parkes

Campbell

et al. 2020

Dementia

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Introduction Better understanding of patient experience is an important driver for service improvements and can act as a lever for system change. In the United Kingdom, the patient experience is now a central issue for the National Health Service Commissioning Board, clinical commissioning groups and the providers they commission from. Traditionally, dementia care in the United Kingdom has focused predominantly on the individual experience of those with late onset dementia, while the voice of those with young onset dementia has been, comparatively, unheard. This study aims to improve the understanding of the personal experience of younger people undergoing investigation for dementia. Methods A modified Delphi approach was undertaken with 18 younger people with dementia and 18 supporters of people with young onset dementia. Questions were informed by a scoping review of the literature (O’Malley, M., Carter, J., Stamou, V., Lafontaine, J., & Parkes, J. (2019a). Receiving a diagnosis of young onset dementia: A scoping review of lived experiences. Ageing & Mental Health, 0(0), 1-12). Summary individual statements were refined over two rounds to a final list of 29 key statements. Results Twenty-seven of these statements were rated as absolutely essential or very important and included (1) for the general practitioner to identify dementia in younger people, (2) clinicians should be compassionate, empathic and respectful during the assessment and particularly sensitive when providing information about a diagnosis, and (3) remembering that receiving the diagnosis is a lot to absorb for a person with dementia and their supporter. Statistical analyses found no difference in the scoring patterns between younger people with dementia and supporters, suggesting similar shared experiences during the diagnostic process. Conclusion Understanding the uniquely personal experience of young people going through the process of diagnosis for dementia is essential to provide person-centred, needs-led, and cost-effective services. Patient’s values and experiences should be used to support and guide clinical decision-making.

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“…These findings were confirmed by regression modelling in which being in receipt of specialist YOD services made a positive contribution to service satisfaction. Whilst overall satisfaction varied, and low services use was reported, 8 many people were satisfied with their care and offered examples of good quality support (reported elsewhere 19 ).…”

Section: Discussionmentioning

confidence: 99%

“…It included four parts. Part 1 comprised open‐ended questions on positive experiences of service support (reported elsewhere 19 ) and a 7‐point Likert‐scale rating of overall satisfaction with quality of services. Part 2 requested socio‐demographic information about the person with YOD (age, gender, diagnosis, when symptoms appeared, date of diagnosis, number of prescription medications, how long the person could be alone, household composition, place of residence, educational level, occupation, employment status, income).…”

Section: Methodsmentioning

confidence: 99%

Services for people with young onset dementia: The ‘Angela’ project national UK survey of service use and satisfaction

Stamou

Fontaine

Gage

et al. 2020

Int J Geriat Psychiatry

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Objectives Young onset dementia is associated with distinctive support needs but existing research on service provision has been largely small scale and qualitative. Our objective was to explore service use, cost and satisfaction across the UK. Methods Information about socio‐demographic characteristics, service use and satisfaction were gathered from people with young onset dementia (YOD) and/or a family member/supporter via a national survey. Results Two hundred and thirty‐three responses were analysed. Diagnosis was most commonly received through a Memory Clinic or Neurology. The type of service delivering diagnosis impacted on post‐diagnostic care. Those diagnosed in specialist YOD services were more likely to receive support within the first 6 weeks and receive ongoing care in the service where they were diagnosed. Ongoing care management arrangements varied but generally care was lacking. Around 42% reported no follow‐up during 6‐weeks after diagnosis; over a third reported seeing no health professional within the previous 3 months; just over a third had a key worker and just under a third had a care plan. Satisfaction and quality of care were highest in specialist services. Almost 60% of family members spent over 5 h per day caring; median costs of health and social care, 3 months, 2018, were £394 (interquartile range £389 to 640). Conclusions Variation across diagnostic and post‐diagnostic care pathways for YOD leads to disparate experiences, with specialist young onset services being associated with better continuity, quality and satisfaction. More specialist services are needed so all with YOD can access age‐appropriate care.

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The nature of positive post-diagnostic support as experienced by people with young onset dementia

Cited by 34 publications

References 30 publications

Understanding the financial impact of a diagnosis of young onset dementia on individuals and families in the United Kingdom: Results of an online survey

Understanding the financial impact of a diagnosis of young onset dementia on individuals and families in the United Kingdom: Results of an online survey

Receiving a diagnosis of young onset dementia: Evidence-based statements to inform best practice

Services for people with young onset dementia: The ‘Angela’ project national UK survey of service use and satisfaction

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