Receiving a diagnosis of young onset dementia: a scoping review of lived experiences

Abstract

Receiving a diagnosis of young onset dementia: a scoping review of lived experiences Objectives: The personal experience of receiving a diagnosis of young onset dementia (YOD) is often overlooked in a complex assessment process which can require substantial investigation. To understand the lived experiences of younger people undergoing assessment and receiving a diagnosis of dementia, we undertook a thematic synthesis of qualitative studies published until November 2018. The aim of this review was to inform a Delphi study with younger people diagnosed with dementia to learn how diagnostic process could be improved, and to identify the strengths and weaknesses of current approaches and help educate professionals concerning key issues. Method: Systematic searches of appropriate bibliographic databases were conducted to collate literature involving self-reported experiences of diagnosis of YOD. Eight out of 47 initially-identified papers satisfied our search term criteria, and all papers were quality assessed using Walsh & Browne's criteria for methodological appraisal. Results: The review of the literature emphasises that delays in diagnosis can often be attributed to (1) delays in accessing help by the younger person, and (2) misattribution of symptoms by the clinician. The impact of diagnosis is influenced by the language used by the clinician, and the younger people diagnosed with dementia and their families' reactions to the diagnosis vary from feelings of reassurance (in that their symptoms are now explained), to shock and destabilisation. Conclusion: Understanding the perspective of a younger person undergoing assessment for dementia is important both in terms of promoting future engagement with services and in designing and evaluating interventions to improve the diagnostic process. This review suggests that improving the recognition of presenting symptoms, reducing diagnostic errors and identifying the emotional needs arising from diagnosis are required to improve the diagnostic experience for younger adults.

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

“…Of note, rapid referral to specialists, early identification of presenting symptoms by GPs, convenient appointment times especially for working adults are in-line with known 'pinch points' in current care pathways for YPD which result in delays in referral (O'Malley et al, 2019a(O'Malley et al, , 2019bVan Vliet et al, 2011). Clinicians taking time to gather the views of important informants and listening to the whole family, overlaps with good practice guidance for clinicians in assessment and history taking, particularly where the person with dementia may lack insight into their difficulties or the presentation is non-amnestic and harder to recognise (Harding et al, 2018;O'Malley et al, 2019b).…”

“…Literature review. An in-depth literature review (O'Malley et al, 2019a) was conducted to provide focus for the questions and the modified Delphi study design. The review identified eight qualitative research studies which highlighted the key diagnostic concerns for those with YOD as a theme or finding.…”

The effects of meditation on individuals facing loneliness: a scoping review

“…Group classes 8 weeks No Not applicable Lindsay et al 2019 [ 25 ] Mindfulness training reduces loneliness and increases social contact in a randomized controlled trial United States Smart-phone delivered intervention (remote, at-home study activities) Three-arm randomized controlled dismantling trial 153 healthy but stressed English-speaking adults who owned smartphones No definition provided Smartphone based lessons consisting of training in either: monitoring and acceptance, monitoring only, or active control training. Lessons consisted on 20-min of audio in addition to brief homework practice 2 weeks No Not applicable Pandya 2019 [ 26 ] Meditation program mitigates loneliness and promotes wellbeing, life satisfaction and contentment among retired older adults: A two-year follow-up study in four South Asian cities India, Nepal, Myanamar, Sri Lanka Voluntary agencies located in each of the 4 South Asian cities RCT Retired older adult members (retired for 2–5 years at start of study); ss: Post-test, 166 remained with intervention and 157 with control (n = 323) Loneliness is the perceived absence of positive social relationships and intimate relationships, varies based on personal and contextual determinants and is a negative emotional experience. Loneliness is an outcome of the subjective, cognitive evaluation of there being a mismatch between the quality and quantity of existing relationships on the one hand, and relationship standards on the other Customized meditation program (instructor-led and in groups), the key features of which were: (i) postures interspersed with relaxation, (ii) slowness in movements and, (iii) inner watchful awareness.…”

“…In contrast, patients in the monitor only or control group did not showcase any significant differences in loneliness and social interactions pre- to post-intervention Overall, monitor and acceptance training reduced daily-life loneliness by 22%, and increased social interactions by 2 more interactions per day and one more person per day compared to monitor only or control training Study Design: Sampling (Recruited a sample of stressed community adults rather than specifically targeting socially isolated individuals) and follow-up (no follow-up included in study) Further research is needed to test whether smartphone-based mindfulness meditation training can reduce loneliness within lonely population Further research is also needed to identify whether mindfulness training helps strengthen current relationships or aids in the formation of new relationships This 2-week trial provides evidence that individually delivered smartphone-based mindfulness training can reduce loneliness and increase social contact in daily life. Importantly, the differences between intervention groups showcased the importance of developing an accepting attitude towards present experiences in order to decrease loneliness and improve social contact Pandya 2019 [ 26 ] Loneliness, Well-Being, Life Satisfaction, Contentment with Life 6-Item de Jong Gierveld Loneliness Scale Warwick-Edinburgh Mental Wellbeing Scale 5-Item Satisfaction with Life Scale (SWLS) Contentment with Life Assessment Scale Not available Not applicable Positive: Pre-Intervention: There were no significant differences in psychosocial measures within the intervention and control group at baseline Post-Intervention: No significant increases in measures for control group. In contrast, the intervention group showed a significant decrease in loneliness, significant increase in mental well-being, satisfaction with life, and contentment with life.…”

“…Of these studies, 11 out of 13 (85%) studies identified improvements in relation to loneliness [ 9 , 22 – 27 , 29 – 31 , 33 ]. Of these 11 studies, 7 (64%) studies identified a significant decrease in loneliness within their intervention groups [ 9 , 22 – 24 , 26 , 27 , 29 ]. Lindsay et al also found significant decreases in loneliness, however, only in one of the two intervention groups within the study that had used meditative techniques (monitor and acceptance) [ 25 ].…”