Age, Dementia, and Diagnostic Candidacy: Examining the Diagnosis of Young Onset Dementia Using the Candidacy Framework

2020 ◽  
pp. 104973232097019
Author(s):  
Sheila Novek ◽  
Verena H. Menec
Keyword(s):  
Health Professionals ◽  
Family Members ◽  
Dementia Care ◽  
Organizational Level ◽  
Diagnostic Process ◽  
Structured Interviews ◽  
Young Onset ◽  
Treatment Gaps ◽  
Canadian City ◽  
Young Onset Dementia

People living with young onset dementia face significant barriers to diagnosis, resulting in delays, misdiagnoses, and treatment gaps. We examined the process of accessing and delivering a diagnosis of young onset dementia using the candidacy framework as a conceptual lens. Semi-structured interviews were conducted with six people living with dementia, 14 family members, and 16 providers in a western Canadian city. Participants’ accounts revealed the diagnosis of young onset dementia as a negotiated process involving patients, family members, and health professionals. Assumptions about age and dementia affected how participants interpreted their symptoms, how they presented to services, and how they, in turn, were perceived by providers. At the organizational level, age-restrictions, fragmentation, and unclear referral pathways further complicated the diagnostic process. Our findings lend support to the growing call for specialist young onset dementia care and point toward several recommendations to develop more age-inclusive diagnostic services.

The experiences and needs of children living with a parent with young onset dementia: results from the NeedYD study

2013 ◽  
Vol 26 (12) ◽  
pp. 2001-2010 ◽  
Author(s):  
Joany K. Millenaar ◽  
Deliane van Vliet ◽  
Christian Bakker ◽  
Myrra J. F. J. Vernooij-Dassen ◽  
Raymond T. C. M. Koopmans ◽  
...  
Keyword(s):  
Coping Styles ◽  
Specific Information ◽  
Structured Interviews ◽  
Specific Knowledge ◽  
Young Onset ◽  
Care And Support ◽  
Young Parent ◽  
Young Onset Dementia ◽  
The Impact ◽  
Family Centered

ABSTRACTBackground:Children of patients with young onset dementia (YOD) who are confronted with a parent who has a progressive disease, often assist in caregiving tasks, which may have a great impact on their lives. The objective of the present study is to explore the experiences of children living with a young parent with dementia with a specific focus on the children's needs.Methods:Semi-structured interviews with 14 adolescent children between the ages of 15 and 27 years of patients with YOD were analyzed using inductive content analysis. Themes were identified based on the established codes.Results:The emerging categories were divided into three themes that demonstrated the impact of dementia on daily life, different ways of coping with the disease, and children's need for care and support. The children had difficulties managing all of the responsibilities and showed concerns about their future. To deal with these problems, they demonstrated various coping styles, such as avoidant or adaptive coping. Although most children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behavior of their parent. The children felt more comfortable talking to someone who was familiar with their situation and who had specific knowledge of YOD and the available services.Conclusion:In addition to practical information, more accessible and specific information about the diagnosis and the course of YOD is needed to provide a better understanding of the disease for the children. These findings underline the need for a personal, family-centered approach.

Limited engagement in, yet clear preferences for advance care planning in young-onset dementia: An exploratory interview-study with family caregivers

2019 ◽  
Vol 33 (9) ◽  
pp. 1166-1175 ◽  
Author(s):  
Romy Van Rickstal ◽  
Aline De Vleminck ◽  
Melissa D Aldridge ◽  
Sean R Morrison ◽  
Raymond T Koopmans ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Advance Care Planning ◽  
Quality Care ◽  
Third Party ◽  
Care Planning ◽  
Structured Interviews ◽  
Young Onset ◽  
People With Dementia ◽  
Advance Care ◽  
Young Onset Dementia

Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers’ preferences for how to ideally engage in the process with patients, family and professionals. Design: A qualitative study was conducted: we analysed semi-structured interviews ( n = 15) through the method of constant comparative analysis. Setting/participants: We included Flemish family caregivers of persons with young-onset dementia. Results: Plans for the future typically concerned non-medical affairs. Participants’ limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients’ cognitive competence. However, endorsement for advance care planning showed from respondents’ preferences that it should be initiated timely, by a third party, and emphasize patients’ remaining capacities. Finally, the need for information and high-quality care emerged. Conclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.

‘We can't keep going on like this’: identifying family storylines in young onset dementia

2013 ◽  
Vol 34 (8) ◽  
pp. 1397-1426 ◽  
Author(s):  
PAMELA ROACH ◽  
JOHN KEADY ◽  
PENNY BEE ◽  
SION WILLIAMS
Keyword(s):  
Narrative Analysis ◽  
Family Members ◽  
Supportive Services ◽  
Family Experience ◽  
Young Onset ◽  
Narrative Design ◽  
Everyday Lives ◽  
People With Dementia ◽  
Young Onset Dementia

ABSTRACTIn this study, we identify the dominant storylines that were embedded in the narratives of younger people with dementia and their nominated family members. By implementing a longitudinal, narrative design underpinned by biographical methods we generated detailed family biographies with five families during repeated and planned research contacts (N=126) over a 12–15-month period between 2009 and 2010. The application of narrative analysis within and between each family biography resulted in the emergence of five family storyline types that were identified as: agreeing; colluding; conflicting; fabricating; and protecting. Whilst families were likely to use each of these storylines at different points and at different times in their exposure to young onset dementia, it was found that families that adopted a predominantly ‘agreeing’ storyline were more likely to find ways of positively overcoming challenges in their everyday lives. In contrast, families who adopted predominantly ‘conflicting’ and ‘colluding’ storylines were more likely to require help to understand family positions and promote change. The findings suggest that the identification of the most dominant and frequently occurring storylines used by families may help to further understand family experience in young onset dementia and assist in planning supportive services.

scholarly journals What do health professionals need to know about young onset dementia? An international Delphi consensus study

2022 ◽  
Vol 22 (1) ◽  
Author(s):  
Leah Couzner ◽  
Sally Day ◽  
Brian Draper ◽  
Adrienne Withall ◽  
Kate E. Laver ◽  
...  
Keyword(s):  
Health Professionals ◽  
Delphi Study ◽  
Online Survey ◽  
Psychosocial Support ◽  
Neuropsychiatric Symptoms ◽  
Contributing Factors ◽  
Delphi Consensus ◽  
Young Onset ◽  
Family Approach ◽  
Young Onset Dementia

Abstract Background People 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. Methods An 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. Results The 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. Conclusions The 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.

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

Dementia ◽  
2020 ◽  
pp. 147130122096926
Author(s):  
Mary O’Malley ◽  
Jacqueline Parkes ◽  
Jackie Campbell ◽  
Vasileios Stamou ◽  
Jenny LaFontaine ◽  
...  
Keyword(s):  
United Kingdom ◽  
Patient Experience ◽  
Scoping Review ◽  
Personal Experience ◽  
Diagnostic Process ◽  
Young Onset ◽  
The United Kingdom ◽  
Delphi Approach ◽  
People With Dementia ◽  
Young Onset Dementia

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.

scholarly journals Health Professional Perspectives on Rehabilitation for People With Dementia

2019 ◽  
Vol 60 (3) ◽  
pp. 503-512 ◽  
Author(s):  
Monica Cations ◽  
Natalie May ◽  
Maria Crotty ◽  
Lee-Fay Low ◽  
Lindy Clemson ◽  
...  
Keyword(s):  
Health Professionals ◽  
Care Pathway ◽  
Rehabilitation Program ◽  
Dementia Care ◽  
Structured Interviews ◽  
Multidisciplinary Rehabilitation ◽  
Rehabilitation Programs ◽  
People With Dementia ◽  
Increasing Demand ◽  
Pathway Analyses

Abstract Background and Objectives Multidisciplinary rehabilitation is not incorporated into the usual care pathway for dementia despite increasing demand from key advocates. Clinician views regarding the relevance of rehabilitation in dementia care are not well known. This qualitative study explored the perspectives of health professionals regarding barriers to provision of multidisciplinary rehabilitation programs for people with dementia. Research Design and Methods Sixteen health professionals from a variety of settings and professional backgrounds were purposively sampled using maximum variation sampling. Semi-structured interviews were conducted to explore attitudes toward the care of people with dementia and beliefs about the feasibility and value of multidisciplinary rehabilitation in this population. Thematic analysis was used to identify themes. Results Participating clinicians acknowledged problems with existing dementia care pathways in Australia but rarely conceptualized rehabilitation as relevant to this pathway. Analyses yielded two main and related themes: (i) difficulty defining worthwhile outcomes of a rehabilitation program for people with dementia and (ii) perceived barriers to participation in this population. Clinicians felt that achievable outcomes for people with dementia were not sufficiently worthwhile for investment. Discussion and Implications Broader acceptance of multidisciplinary rehabilitation as relevant to dementia care will require a reframing of practice that both educates emerging health professionals regarding the outcomes that may be achievable for people with dementia and persuades staff to appreciate that the investment is worthwhile.

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