Joshua Stott

The impact of young onset dementia on the family: a literature review.

BACKGROUND The needs of younger people with dementia have become increasingly recognized in service development. However, little is known about the impact of a diagnosis of young onset dementia on people aged under 65 years and their families. This paper reviews the literature on the experiences of younger people with dementia and their families in the U.K., and outcomes for carers. METHODS Twenty-six studies, encompassing a variety of themes concerning this population, were reviewed following a systematic literature search. RESULTS Results are divided into the impact on the individual and the impact on the family, specifically carer outcomes and the impact on children. CONCLUSIONS The studies reviewed reveal a number of negative outcomes for the individual and carers, and highlight the need for further research.

''Just Helping': Children living with a parent with young onset dementia'.

Objectives: While the consequences of caring for younger people with dementia have been a growing area of research, little is known about the children of these individuals. This study aimed to discover whether children of younger people with dementia can be compared to other young carers, the impact of their caring on mood, burden and resilience and what could promote coping. Method: In-depth interviews were carried out with 12 participants aged 11–18. A grounded theory methodology was used, supplemented with three quantitative measures. Results: Four higher order categories were identified focusing on: discovering dementia; developing a new relationship; learning to live with it and going through it together. Few participants showed depressive symptomatology, but more than half showed high levels of burden and most showed moderate levels of resilience. A three-stage process model of adapting to dementia is proposed, with children moving through grief to emotional detachment and increased maturity. Conclusion: This study has implications for service development in light of the National Dementia Strategy and proposals for whole family approaches for young carers. Whole family working by both dementia and childrens services could reduce the burden on children of people with young onset dementia.

Barriers to Social Participation among Lonely Older Adults: The Influence of Social Fears and Identity

Introduction Loneliness among older adults is a major public health problem that may be associated with processes of social participation and identity. This study therefore sought to examine the relationship between social participation and identity in a sample of lonely older adults living independently in London, England. Method An inductive qualitative approach, based on semi-structured interviews and thematic analysis, was employed. Results Participants commonly spoke of barriers to social participation that have been reported elsewhere, including illness/disability, loss of contact with friends/relatives, lack of a supportive community, and lack of acceptable social opportunities. However, novel findings were also derived. In particular, participants commonly minimised the difficulties they faced alone, and described attempts to avoid social opportunities. These behaviours were linked to fears about engaging in social participation opportunities, including fears of social rejection and/or exploitation, and fears of losing valued aspects of identity. Discussion It is concluded that social participation amongst lonely older people will not improve through the removal of previously reported barriers alone; instead, older peoples’ beliefs, fears and identities must be addressed. Suggestions for implementing these findings within community organisations are provided.

Cognitive stimulation therapy (CST): neuropsychological mechanisms of change

BACKGROUND Cognitive stimulation therapy (CST) is an evidence-based psychosocial intervention for people with dementia consisting of 14 group sessions aiming to stimulate various areas of cognition. This study examined the effects of CST on specific cognitive domains and explored the neuropsychological processes underpinning any effects. METHODS A total of 34 participants with mild to moderate dementia were included. A one-group pretest-posttest design was used. Participants completed a battery of neuropsychological tests in the week before and after the manualised seven-week CST programme. RESULTS There were significant improvement pre- to post-CST group on measures of delayed verbal recall (WMS III logical memory subtest - delayed), visual memory (WMS III visual reproduction subtest - delayed), orientation (WMS III information and orientation subscale), and auditory comprehension (Token Test). There were no significant changes on measures of naming (Boston Naming Test-2), attention (Trail Making Test A/Digit Span), executive function (DKEFS verbal fluency/Trail Making Test B), praxis (WMS III visual reproduction - immediate) or on a general cognitive screen (MMSE). CONCLUSIONS Memory, comprehension of syntax, and orientation appear to be the cognitive domains most impacted by CST. One hypothesis is that the language-based nature of CST enhances neural pathways responsible for processing of syntax, possibly also aiding verbal recall. Another is that the reduction in negative self-stereotypes due to the de-stigmatising effect of CST may impact on language and memory, domains that are the primary focus of CST. Further research is required to substantiate these hypotheses.

Limited validity of the Hospital Anxiety and Depression Scale (HADS) in dementia: evidence from a confirmatory factor analysis

The Hospital Anxiety and Depression Scale (HADS) is a well‐validated, self‐report measure of both anxiety and depression. It is frequently used with people with dementia. However, its structural validity has never been examined in this population. The current study used confirmatory factor analysis (CFA) to assess this.

‘Suddenly the first fifty years of my life made sense’: Experiences of older people with autism:

Research on the experience of growing older with autism is very limited. In this study, 13 people with autism aged over 50 years participated in semi-structured interviews about their experiences of diagnosis, social support and getting older. Interviews were analysed using thematic analysis. Three overarching themes were generated: difference, life review and longing for connection. Prior to diagnosis, individuals had awareness of their difficulties, attributed these to intrinsic difference and engaged in a deliberate process of reducing the visibility of this difference. Diagnosis prompted a process of life review and externalisation, whereby past negative experiences were reattributed to autism as opposed to the self. Loneliness, isolation and yearning for interpersonal connection were ubiquitous and longstanding. Autism support and social groups were highly valued, offering opportunities for belonging, acceptance and social comparison. Results highlight the similarity to younger age groups in terms of lived experience and need for greater support, particularly with respect to reducing isolation and improving access to diagnosis.

Euthanasia and physician-assisted suicide in dementia: A qualitative study of the views of former dementia carers

Background: Despite media and academic interest on assisted dying in dementia, little is known of the views of those directly affected. Aim: This study explored the views of former carers on assisted dying in dementia. Design: This was a qualitative study using thematic analysis. Setting/participants: A total of 16 former carers of people with dementia were recruited through national dementia charities and participated in semi-structured interviews. Results: While many supported the individual’s right to die, the complexity of assisted dying in dementia was emphasized. Existential, physical, psychological and psychosocial aspects of suffering were identified as potential reasons to desire an assisted death. Most believed it would help to talk with a trained health professional if contemplating an assisted death. Conclusion: Health workers should be mindful of the holistic experience of dementia at the end of life. The psychological and existential aspects of suffering should be addressed, as well as relief of physical pain. Further research is required.

An adapted mindfulness intervention for people with dementia in care homes: feasibility pilot study

Depression and anxiety are common in dementia. There is a need to develop effective psychosocial interventions. This study sought to develop a group‐based adapted mindfulness programme for people with mild to moderate dementia in care homes and to determine its feasibility and potential benefits.

A Mindfulness Program Manual for People With Dementia

This article describes a 10-session group-based Mindfulness Program for people with mild to moderate dementia. It aims to equip people with dementia with skills to manage psychological distress, with support from carers. The Mindfulness Program was developed through reviews of existing literature, consultation with experts, and a focus group with people with dementia. In a randomized controlled feasibility and pilot trial with people with mild to moderate dementia in care homes, it was found to significantly increase quality of life. The manual presented here is designed to be administered flexibly to promote participants’ personhood. The protocol is designed for use by therapists with experience in practicing mindfulness meditation.

Dementia Screening Accuracy is Robust to Premorbid IQ Variation: Evidence from the Addenbrooke’s Cognitive Examination-III and the Test of Premorbid Function

BACKGROUND Scores on cognitive screening tools for dementia are associated with premorbid IQ. It has been suggested that screening scores should be adjusted accordingly. However, no study has examined whether premorbid IQ variation affects screening accuracy. OBJECTIVE To investigate whether the screening accuracy of a widely used cognitive screening tool for dementia, the Addenbrookes cognitive examination-III (ACE-III), is improved by adjusting for premorbid IQ. METHODS 171 UK based adults (96 memory service attendees diagnosed with dementia and 75 healthy volunteers over the age of 65 without subjective memory impairments) completed the ACE-III and the Test of Premorbid Function (TOPF). The difference in screening performance between the ACE-III alone and the ACE-III adjusted for TOPF was assessed against a reference standard; the presence or absence of a diagnosis of dementia (Alzheimers disease, vascular dementia, or others). RESULTS Logistic regression and receiver operating curve analyses indicated that the ACE-III has excellent screening accuracy (93% sensitivity, 94% specificity) in distinguishing those with and without a dementia diagnosis. Although ACE-III scores were associated with TOPF scores, TOPF scores may be affected by having dementia and screening accuracy was not improved by accounting for premorbid IQ, age, or years of education. CONCLUSION ACE-III screening accuracy is high and screening performance is robust to variation in premorbid IQ, age, and years of education. Adjustment of ACE-III cut-offs for premorbid IQ is not recommended in clinical practice. The analytic strategy used here may be useful to assess the impact of premorbid IQ on other screening tools.