This is Me: Evaluation of a boardgame to promote social engagement, wellbeing and agency in people with dementia through mindful life-storytelling

This paper reports on the challenges associated with implementing and evaluating an innovative pilot music and movement project. The evaluation documents that participants enjoyed the sessions and that they created the opportunity for social engagement although there is little to suggest this is unique to this particular type of intervention. Difficulties included matching the programme to the needs of participants, communicating effectively, and over burdensome paperwork. The paper also comments on the challenges associated with last minute, limited funding opportunities for both the organisation commissioning a project and the team evaluating it. In this case, the evaluation team found that many of the more difficult issues associated with the pilot could have been resolved with more time for planning and preparation.

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Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia

Psychological Medicine ◽

10.1017/s0033291718000405 ◽

2018 ◽

Vol 48 (13) ◽

pp. 2130-2139 ◽

Cited By ~ 61

Author(s):

Anthony Martyr ◽

Sharon M. Nelis ◽

Catherine Quinn ◽

Yu-Tzu Wu ◽

Ruth A. Lamont ◽

...

Keyword(s):

Quality Of Life ◽

Systematic Review ◽

Life Satisfaction ◽

Social Engagement ◽

Meta Analysis ◽

Well Being ◽

Factors Associated ◽

Living Well ◽

People With Dementia

AbstractCurrent policy emphasises the importance of ‘living well’ with dementia, but there has been no comprehensive synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We examined the available evidence in a systematic review and meta-analysis. We searched electronic databases until 7 January 2016 for observational studies investigating factors associated with QoL, well-being and life satisfaction in people with dementia. Articles had to provide quantitative data and include ⩾75% people with dementia of any type or severity. We included 198 QoL studies taken from 272 articles in the meta-analysis. The analysis focused on 43 factors with sufficient data, relating to 37639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1–0.29) or negligible (<0.09). Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health (including depression and other neuropsychiatric symptoms) and poorer carer well-being were associated with poorer QoL. Longitudinal evidence about predictors of QoL was limited. There was a considerable between-study heterogeneity. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.

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Older People With Dementia Running a Pop-Up Restaurant: How to Use Reality Shows to Reduce the Stigma of Dementia

Innovation in Aging ◽

10.1093/geroni/igab046.685 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 181-181

Author(s):

Wenqian Xu

Keyword(s):

Risk Factor ◽

Older People ◽

Family Caregivers ◽

Social Engagement ◽

Signs And Symptoms ◽

Later Life ◽

Personal Goals ◽

Family Carers ◽

Reality Show ◽

People With Dementia

Abstract The present study focused on a Chinese reality show, Forget Me Not Café, which brought together five older people (aged 65 and older) living with dementia to run a pop-up restaurant and intended to reduce the stigma of dementia. The study aims to explore how the reality-show participants describe dementia in older people and how their views relate to the macrosocial context of dementia and older people. This study performed a thematic discourse analysis on the written and spoken content about dementia in older people (or later life) presented in the reality show. Four discursive themes were identified including: (1) age is a risk factor for dementia; (2) early signs and symptoms of dementia in older people deserve attention; (3) putting pressure on family caregivers of people with dementia; (4) expectations to maintain social engagement and slow down the development of dementia. This study also found that the views of the reality-show participants highlight the capability of older people with dementia to communicate effectively and live with the condition, their personal goals of sustaining a happy, meaningful and sociable life, as well as their actions to positively influence personal circumstances. The results of this study indicate that this reality show might help reduce the stigma of dementia and empower older people living with dementia, while it also tends to stress the responsibility for care on family carers and shift the responsibility of managing the dementia-related challenges to older people living with dementia.

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Therapeutic Music Interventions to Support People With Dementia Living at Home With Their Family Caregivers

Music and Dementia ◽

10.1093/oso/9780190075934.003.0013 ◽

2019 ◽

pp. 269-287

Author(s):

Jeanette Tamplin ◽

Imogen N. Clark

Keyword(s):

Social Engagement ◽

Self Awareness ◽

Music Participation ◽

Music Therapists ◽

People With Dementia ◽

Severe Stage ◽

Musical Interactions ◽

Diagnosis Of Dementia ◽

Person With Dementia ◽

At Home

Music can be used therapeutically in home and community settings throughout the trajectory of dementia. Communal singing experiences offer opportunities for music participation and social engagement that are accessible and enjoyable for people with dementia at any stage of severity. They also provide a means of communication and facilitate relationships between people with dementia and their carers through shared and meaningful musical interactions. In the early stages after a diagnosis of dementia, supported opportunities to sing together, along with the associated prospects for peer support and social interaction, may enable family carers to care for loved ones at home for as long as possible. In the later stages of dementia, singing may be the only way for the person with dementia to communicate and connect with others. Music processing capacities can be retained until the severe stage and music can stimulate memories and self-awareness for the person with dementia. Supported songwriting can be therapeutic for both people with dementia and their caregivers in facilitating emotional expression and acknowledging and validating feelings. This chapter explores the range of music participation opportunities available to people living with dementia at home with their caregivers at various stages of the disease. We also outline the differences in groups facilitated by music therapists and community musicians and highlight ways that caregivers can use music therapeutically in the home environment.

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Service-related needs of older people with dementia: perspectives of service users and their unpaid carers

International Psychogeriatrics ◽

10.1017/s1041610213000343 ◽

2013 ◽

Vol 25 (7) ◽

pp. 1107-1114 ◽

Cited By ~ 21

Author(s):

Sylwia Górska ◽

Kirsty Forsyth ◽

Linda Irvine ◽

Donald Maciver ◽

Susan Prior ◽

...

Keyword(s):

Older People ◽

Lived Experience ◽

Service Provision ◽

Social Engagement ◽

Diagnostic Procedures ◽

Political Agenda ◽

People With Dementia ◽

Health And Social Care ◽

The Impact ◽

Diagnostic Support

ABSTRACTBackground: Dementia is a major cause of disability among older people and constitutes one of the greatest challenges currently facing families and health and social care services in the developed world. In response to trends in dementia prevalence and the impact the condition has on peoples’ lives, dementia care has been placed high on the public and political agenda in the United Kingdom. However, despite significant public resources being allocated to combat the impact of the disease, recent evidence indicates that numerous challenges in relation to service provision remain. This study aimed to develop a deeper understanding of the lived experience of people with dementia regarding their service-related needs.Method: The study made use of data gathered through individual semi-structured, narrative interviews conducted with persons with experience of dementia and their unpaid carers.Results: Although participants were generally satisfied with the services they received, a number of unmet needs related to service provision were identified. In terms of diagnostic procedures the findings of this study indicate the need for early diagnosis delivered through a comprehensive assessment package. The participants also highlighted the need for well-coordinated post-diagnostic support, greater continuity of care concerning the personnel involved, and enhanced access to non-pharmacological interventions to support identity and social engagement.Conclusion: This study contributes to a better understanding of service-related needs of people with dementia in relation to diagnostic procedures and post-diagnostic support.

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Alzheimer's Association Project VITAL: A Florida Statewide Initiative Using Technology to Impact Social Isolation and Well-Being

Frontiers in Public Health ◽

10.3389/fpubh.2021.720180 ◽

2021 ◽

Vol 9 ◽

Author(s):

Lorna E. Prophater ◽

Sam Fazio ◽

Lydia T. Nguyen ◽

Gizem Hueluer ◽

Lindsay J. Peterson ◽

...

Keyword(s):

Online Education ◽

Family Caregivers ◽

Social Isolation ◽

Social Engagement ◽

Well Being ◽

Care Staff ◽

Project Echo ◽

Learning Platform ◽

People With Dementia ◽

The Impact

Lack of social engagement and the resulting social isolation can have negative impacts on health and well-being, especially in senior care communities and for those living with dementia. Project VITAL leverages technology and community resources to create a network for connection, engagement, education, and support of individuals with dementia and their caregivers, and explores the impact of these interventions in reducing feelings of social isolation and increasing mood among residents during the COVID-19 pandemic. Through two phases, 600 personalized Wi-Fi-enabled iN2L tablets were distributed to 300 senior care communities (55% assisted living communities, 37% skilled nursing communities, 6% memory care communities, and 2% adult family-care homes) to connect and engage residents and their families. Different phases also included Project ECHO, a video-based learning platform, Alzheimer's Association virtual and online education and support for family caregivers, evidence-based online professional dementia care staff training and certification, and Virtual Forums designed to explore ways to build sustainable, scalable models to ensure access to support and decrease social isolation in the future. Tablet usage was collected over an 11-month period and an interim survey was designed to assess the effectiveness of the tablets, in preventing social isolation and increasing mood among residents during the COVID-19 pandemic. A total of 105 care community staff (whose community used the tablets) completed the survey and overall, these staff showed a high level of agreement to statements indicating that residents struggled with loneliness and mood, and that the tablet was useful in improving loneliness and mood in residents and allowing them to stay in touch with family and friends. Additional positive results were seen through a variety of other responses around the tablets and Project ECHO. Overall, the tablets were shown to be an effective way to engage residents and connect them with friends and family, as well as being a useful tool for staff members. A third phase is currently underway in the homes of people with dementia and their family caregivers, which includes tablets and direct access to Alzheimer's Association virtual and online education and support programs.

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325 Exploring the Complexity of Dementia and Loneliness in Ireland

Age and Ageing ◽

10.1093/ageing/afz103.209 ◽

2019 ◽

Vol 48 (Supplement_3) ◽

pp. iii17-iii65

Author(s):

Irene Hartigan ◽

Nicola Cornally ◽

Tony Foley ◽

Suzanne Timmons ◽

Gyunghee Park ◽

...

Keyword(s):

Social Engagement ◽

Sense Of Self ◽

Cultural Influences ◽

Community Dwelling ◽

Human Contact ◽

People With Dementia ◽

Risk Of Mortality ◽

Self Worth ◽

One Year ◽

Meaningful Relationships

Abstract Background Dementia and loneliness are both complex phenomenon’s that impact on both mental and physical health. Research has identified that loneliness can increase a person’s risk of mortality as much as smoking or alcohol consumption. People with dementia are at particular risk of loneliness and social isolation. This can negatively impact on a person with dementia’s health. To effectively address loneliness in dementia, we must first understand how people with dementia experience loneliness. Methods Interviews were conducted with people living with dementia. Participants comprised of eight community-dwelling individuals, aged 55 years and older (mean = 63.8; range = 55-77), who were each diagnosed with dementia at least one year prior to interview (range = 1.16 – >5 years). Interviews were conducted in participants’ homes using a semi-structured format and lasted between 37-74 minutes. Results Three key themes emerged: the importance of maintaining meaningful relationships, maintaining independence and socio-cultural influences on individual perceptions of loneliness and dementia. The results emphasise the importance of maintaining both a sense of self and meaningful relationships with others post-diagnosis for individuals who identified themselves as “not lonely”. People living with dementia reported that the maintenance of social connection aids in fostering a sense of self-worth and self-management, which in turn mitigates feelings of loneliness. The majority of participants existing social connections with others was established prior to their diagnosis, although the maintenance of these relationships may have required an adjustment of their premorbid routines and method of social engagement. Conclusion Human contact and a meaningful relationship are superior in preventing loneliness. Individual feelings of loneliness or lack thereof are not directly correlated to the coping mechanisms most commonly employed by individuals with dementia. Further exploration is need to understand how people with dementia, who live at home, perceive or experience loneliness.

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TD-P-003: EMPLOYING COMPANION ROBOTS TO ENHANCE SOCIAL ENGAGEMENT FOR PEOPLE WITH DEMENTIA

Alzheimer s & Dementia ◽

10.1016/j.jalz.2018.06.2019 ◽

2006 ◽

Vol 14 (7S_Part_3) ◽

pp. P186-P187

Author(s):

Dympna Casey ◽

Kathleen Murphy ◽

Megan Burke ◽

Adam Santorelli ◽

Eva Barrett ◽

...

Keyword(s):

Social Engagement ◽

People With Dementia ◽

Companion Robots

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Social Robots for the Care of Persons with Dementia

ACM Transactions on Human-Robot Interaction ◽

10.1145/3469653 ◽

2021 ◽

Vol 10 (4) ◽

pp. 1-31

Author(s):

Moojan Ghafurian ◽

Jesse Hoey ◽

Kerstin Dautenhahn

Keyword(s):

Digital Library ◽

Social Engagement ◽

Research Literature ◽

Limited Attention ◽

Social Emotional ◽

Social And Emotional ◽

Assistive Robots ◽

People With Dementia ◽

Assistive Robot ◽

Future Work

Intelligent assistive robots can enhance the quality of life of people with dementia and their caregivers. They can increase the independence of older adults, reduce tensions between a person with dementia and their caregiver, and increase social engagement. This article provides a review of assistive robots designed for and evaluated by persons with dementia. Assistive robots that only increased mobility or brain-computer interfaces were excluded. Google Scholar, IEEE Digital Library, PubMed, and ACM Digital Library were searched. A final set of 53 articles covering research in 16 different countries are reviewed. Assistive robots are categorized into five different applications and evaluated for their effectiveness, as well as the robots’ social and emotional capabilities. Our findings show that robots used in the context of therapy or for increasing engagement received the most attention in the literature, whereas the robots that assist by providing health guidance or help with an activity of daily living received relatively limited attention. PARO was the most commonly used robot in dementia care studies. The effectiveness of each assistive robot and the outcome of the studies are discussed, and particularly, the social/emotional capabilities of each assistive robot are summarized. Gaps in the research literature are identified and we provide directions for future work.

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Psychometric Properties and Factor Analysis of the Engagement and Independence in Dementia Questionnaire (EID-Q)

Dementia and Geriatric Cognitive Disorders ◽

10.1159/000488484 ◽

2018 ◽

Vol 46 (3-4) ◽

pp. 119-127 ◽

Cited By ~ 3

Author(s):

Charlotte R. Stoner ◽

Martin Orrell ◽

Aimee Spector

Keyword(s):

Quality Of Life ◽

Factor Analysis ◽

Psychometric Properties ◽

Internal Consistency ◽

Social Engagement ◽

Convergent Validity ◽

Factor Solution ◽

Adequate Model ◽

People With Dementia

Background/Aims: Independence and social engagement are important outcomes for people with dementia. The aim of this study was to conduct an in-depth psychometric assessment of the Engagement and Independence in Dementia Questionnaire (EID-Q), a measure of social independence. Methods: This was an observational study at five NHS sites across England. Participants completed the EID-Q alongside additional measures. Psychometric analysis included internal consistency, test-retest reliability, convergent validity, and factor analyses. Results: A total of 225 people living with dementia completed the study. Internal consistency was excellent (α = 0.921) and the measure remained moderately stable over a 1-week period (ICC = 0.768). Significant correlations were observed between quality of life (r = 0.682) and depression (r = –0.741; both p < 0.001), indicating the importance of these concepts for wellbeing in dementia. Factor analysis indicated the presence of five factors which loaded onto a second order two-factor solution. These latent factors were named “sense of independence” and “social engagement.” Conclusions: The EID-Q demonstrated acceptable psychometric properties and the factor solution had an adequate model fit. The strong correlations suggest that social independence is strongly related to depression and quality of life. Future work will entail an analysis of responsiveness to intervention and further large-scale work.

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