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

ABSTRACT: AIM:Despite 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. SETTING:Participants' homes, support group premises or university rooms. PARTICIPANTS:14 people with a diagnosis of YOD from a northern UK city. DESIGN:Semistructured, in-depth interviews were audio recorded, transcribed and analysed cross-sectionally following principles of interpretative phenomenological analysis. RESULTS:Four 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. CONCLUSIONS:People 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.

SUBMITTER: Rabanal LI

PROVIDER: S-EPMC6196838 | biostudies-other | 2018 Oct

REPOSITORIES: biostudies-other

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

Rabanal Luisa I LI Chatwin John J Walker Andy A O'Sullivan Maria M Williamson Tracey T

BMJ open 20181021 10

<h4>Aim</h4>Despite 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.<h4>Setting</h4>Participants' homes, support group premises or university rooms.<h4>Participants</h4>14 people with a diagnosis of YO ...[more]

PMID: 30344167

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Project description:ObjectivesLittle is known about the cancer experience and support needs of people with dementia. In particular, no evidence currently exists to demonstrate the likely complex decision-making processes for this patient group and the oncology healthcare professionals (HCP) involved in their care. The aim of this study was to explore the cancer-related information needs and decision-making experiences of patients with cancer and comorbid dementia, their informal caregivers and oncology HCPs.DesignCross-sectional qualitative study. Semistructured interviews were conducted face to face with participants. Interviews were audio recorded and transcribed prior to thematic analysis.SettingPatients with a diagnosis of cancer and dementia, their informal caregivers and oncology HCPs involved in their care, all recruited from a regional treatment cancer centre.ParticipantsPurposeful sample of 10 patients with a diagnosis of cancer-dementia, informal caregivers (n=9) and oncology HCPs (n=12).ResultsFour themes were identified: (1) leading to the initial consultation-HCPs require more detailed information on the functional impact of dementia and how it may influence cancer treatment options prior to meeting the patient; (2) communicating clinically relevant information-informal caregivers are relied on to provide patient information, advocate for the patient and support decision-making; (3) adjustments to cancer care-patients with dementia get through treatment with the help of their family and (4) following completion of cancer treatment-there are continuing information needs. Oncology HCPs discussed their need to consult specialists in dementia care to support treatment decision-making.ConclusionsAlthough patients with cancer-dementia are involved in their treatment decision-making, informal caregivers are generally crucial in supporting this process. Individual patient needs and circumstances related to their cancer must be considered in the context of dementia prognosis highlighting complexities of decision-making in this population. Oncology teams should strive to involve healthcare staff with dementia expertise as early as possible in the cancer pathway.

Project description:BackgroundAdverse Childhood Experiences (ACEs) such as, physical and sexual abuse, neglect, or living in a household with domestic violence or substance misuse, can have negative impacts on mental and physical health across the lifecourse. A deeper understanding of the kinds of services that people affected by ACEs feel they need to overcome these negative impacts is required.Review questionHow do people affected by ACEs between the ages of 3 to 18 experience support and services in the UK? What are their needs relating to services and support?MethodsSystematic review of qualitative evidence. We harvested relevant studies from existing systematic reviews of qualitative evidence located through a search of 18 databases. Included studies needed to be published in or after 2008, conducted in the UK, and report the views of people exposed to ACEs relating to their service needs. We included studies with participants who were affected by ACEs between 3 and 18 years old with no restriction on the age at which they accessed services.ResultsWe identified 71 reviews from which we harvested 238 references on title and abstract screening. Following full text screening and quality and relevance appraisal we included 20 studies. Each of the included studies focussed on a specific ACE population. Almost half focused on young people who were fostered, looked-after or leaving care. No studies focussed on parental incarceration or divorce. Young people value emotional and practical support. Service providers were most valued for displaying empathy, being non-judgemental, and being active listeners. Supportive relationships, especially with adults, are a key factor in feeling understood.ConclusionsPeople affected by ACEs describe the importance of stability and continuity in the support they receive. These factors are important for allowing necessary time to overcome obstacles and build up trust. Research often frames response to ACE in terms of short term individual psychological outcomes but these findings highlight the importance of focussing on wider social factors to encourage meaningful engagement with services.

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Dataset Information

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

Publications

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

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