‘We're happy as we are’: the experience of living with possible undiagnosed dementia

Henley-Einion, Josie; Hillman, Alexandra; Jones, Ian Rees; Woods, Bob; Macleod, Catherine; Pentecost, Claire; Clare, Linda

doi:10.1017/s0144686x21001495

Cited by 7 publications

(5 citation statements)

References 65 publications

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“…The perceived 'luck' of rare dementia diagnosis suggests that positive examples of support are uncommon in Wales. However, whilst 'luck' may appear to be an unexpected quality of receiving a diagnosis of any type of dementia, the perspectives of people in this study suggest that, unlike a previous study in Wales [27], pursuing and receiving a formal diagnosis outweighs the emotional and physical cost of the pathway.…”

Section: Discussioncontrasting

confidence: 80%

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The Diagnostic Pathway Experiences of People Living with Rare Dementia and Their Family Caregivers: A Cross-Sectional Mixed Methods Study Using Qualitative and Economic Analyses

Davies-Abbott,

Anthony,

Jackson

et al. 2024

IJERPH

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The pathways for receiving a diagnosis of a rare type of dementia are poorly understood. Diagnostic challenges decrease access to relevant health promotion activities and post-diagnostic support. This study was focused on pathways experienced by people affected by rare dementia in Wales, United Kingdom (UK), considering the practical, emotional, and economic consequences. Semi-structured interviews were completed with 10 people affected by rare dementia across Wales, UK (nine family caregivers and one person living with rare dementia). The interview data were subject to a thematic analysis and a bottom-up costing approach was used to cost the pathway journeys. Five transitional points occurred across the diagnostic pathway (initial contact, initial referral, further referrals—provider, further referrals—private, and diagnosis) alongside two further themes (i.e., involved in the diagnostic process and disputes between stakeholders). The timeliness of the diagnosis was perceived to often be subject to ‘luck’, with access to private healthcare a personal finance option to expedite the process. Higher economic costs were observed when, in retrospect, inappropriate referrals were made, or multiple referrals were required. The confusion and disputes relating to individual diagnostic pathways led to further emotional burdens, suggesting that higher economic costs and emotional consequences are interlinked. Clearer diagnostic pathways for rare dementia may prevent unnecessary service contacts, waiting times, and associated distress. Prioritising appropriate and timely service contacts leads to diagnosis and support to families and enables people to increase control over their health. Appropriate diagnostic pathways may be less costly and reduce costs for families.

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Section: Discussioncontrasting

confidence: 80%

“…In the UK, the overall costs of diagnosis were estimated at £650 per diagnosis (£735.97 when inflated to 2021 prices) [26]. People in Wales with undiagnosed dementia may feel that the emotional and physical cost of pursuing a diagnosis outweighs the benefits of receiving a formal diagnosis [27].…”

Section: Introductionmentioning

confidence: 99%

The Diagnostic Pathway Experiences of People Living with Rare Dementia and Their Family Caregivers: A Cross-Sectional Mixed Methods Study Using Qualitative and Economic Analyses

Davies-Abbott,

Anthony,

Jackson

et al. 2024

IJERPH

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“…The reported co‐morbidity among the SL group may suggest a significant non‐dementia disease burden, although this was not reflected in self‐rated health, and the group differences were slight. Prioritisation of physical health symptoms has been reported in people with undiagnosed dementia, with a tendency toward normalising symptoms of cognitive decline 44 . Symptoms of dementia are often not viewed as ‘illness’ 45,46 and may have seemed less important, particularly if co‐morbid conditions and treatment were well‐established before the onset of dementia.…”

Section: Discussionmentioning

confidence: 99%

“…Prioritisation of physical health symptoms has been reported in people with undiagnosed dementia, with a tendency toward normalising symptoms of cognitive decline. 44 Symptoms of dementia are often not viewed as 'illness' 45,46 and may have seemed less important, particularly if co-morbid conditions and treatment were wellestablished before the onset of dementia. This merits further investigation.…”

Section: Discussionmentioning

confidence: 99%

Changes in awareness of condition in people with mild‐to‐moderate dementia: Longitudinal findings from the IDEAL cohort

Alexander

Martyr

Clare

2022

Int J Geriat Psychiatry

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Objectives Awareness of difficulties shown by people with dementia is known to vary, but few studies have explored changes in awareness over time. Investigating this could further the understanding of surrounding concepts and reasons for impaired awareness. Recognising emerging or diminishing awareness could facilitate discussions about diagnosis and appropriate post‐diagnostic support. Methods Using longitudinal data from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort, awareness in community‐dwelling people with mild‐to‐moderate dementia was assessed at three timepoints over 2 years. A validated checklist was used to evaluate awareness of difficulties associated with dementia. We examined changes in awareness for people with low awareness at baseline, and used case‐matching to describe differences in characteristics between people who gained awareness, and those who continued with low awareness. Results At baseline, 83 people from a sample of 917 showed low awareness. The majority of those remaining in the study at later timepoints had gained awareness, some as late as four or more years after diagnosis. Case‐matched comparisons revealed few distinguishing characteristics: cases with stable low awareness had similar or better cognitive and functional ability than those who gained and retained awareness at 12 and 24 months, but may have had more co‐morbidities. Conclusions Self‐reported awareness of difficulties can change and may increase over time in people with mild‐to‐moderate dementia. There may be individual reasons for ongoing low awareness, not explained by cognitive or functional ability. This challenges the view that a single record of low awareness represents a fixed disease‐related symptom, and highlights the complex, individual and dynamic nature of awareness.

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“…People may also be reluctant to seek a diagnosis because of fear about the future, the belief that any increased support they might need is unavailable, individual perceptions that there are no treatments available and because they or their families believe they can cope and retain independence [ 17 , 18 ]. Lack of awareness of dementia amongst the general public is another barrier to getting a diagnosis [ 3 ], and sometimes people are unaware themselves that they have a problem or may be in denial [ 22 ].…”

Section: Introductionmentioning

confidence: 99%

Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales study

et al. 2022

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Background Many people living with dementia remain undiagnosed, with diagnosis usually occurring long after signs and symptoms are present. A timely diagnosis is important for the wellbeing of the person living with dementia and the family, allowing them to plan and have access to support services sooner. The aim of this study was to identify demographic characteristics and neuropsychiatric symptoms associated with being undiagnosed, which may help clinicians be more aware of signs that could be indicative of early-stage or undetected dementia. Methods This cross-sectional study uses data from waves 1 and 2 (two years apart) of the Cognitive Function and Ageing Studies Wales (CFAS Wales). CFAS Wales participants were included who had a study assessment of dementia, as determined by the Automated Geriatric Examination for Computer Assisted Taxonomy (AGECAT) algorithm and by expert assessment, and who had had their primary care records checked for a clinical diagnosis of dementia. We identified 19 people with a diagnosis of dementia and 105 people living with undiagnosed dementia, and explored demographic characteristics and the presence or absence of a range of neuropsychiatric symptoms in the undiagnosed population using logistic regression. Results Findings suggest that people living with dementia who have better cognition, have more years of education, or live in more deprived areas are less likely to have a diagnosis. In terms of neuropsychiatric symptoms, depression and sleep problems were associated with being undiagnosed. Apathy was common across all people living with dementia, but those with a diagnosis were more likely to have severe apathy. Conclusions This study has clinical practice implications as the findings may help clinicians be more aware of characteristics and symptoms of people who are undiagnosed or who are at greater risk of remaining undiagnosed, enabling them to be more vigilant in picking up signs of dementia at an earlier stage.

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‘We're happy as we are’: the experience of living with possible undiagnosed dementia

Cited by 7 publications

References 65 publications

The Diagnostic Pathway Experiences of People Living with Rare Dementia and Their Family Caregivers: A Cross-Sectional Mixed Methods Study Using Qualitative and Economic Analyses

The Diagnostic Pathway Experiences of People Living with Rare Dementia and Their Family Caregivers: A Cross-Sectional Mixed Methods Study Using Qualitative and Economic Analyses

Changes in awareness of condition in people with mild‐to‐moderate dementia: Longitudinal findings from the IDEAL cohort

Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales study

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