Health and Social Care in the Community, 30(4), 2022, pp.e1375-e1383.
Publisher:
Wiley
Those diagnosed with dementia and those who provide care and support often feel socially isolated with limited opportunities for social engagement, increasing the potential for loneliness and further isolation that is detrimental to social health. This study examined how a co-designed dementia café impacted on the self-reported social health of community dwelling people with dementia...
(Edited publisher abstract)
Those diagnosed with dementia and those who provide care and support often feel socially isolated with limited opportunities for social engagement, increasing the potential for loneliness and further isolation that is detrimental to social health. This study examined how a co-designed dementia café impacted on the self-reported social health of community dwelling people with dementia and their care partners in the North-West of England. Semi-structured interviews were conducted at two time periods (summer of 2019 and spring of 2020), with five people living with dementia and eight care partners. The key finding was that participating in the cafés led to a sense of belonging and purpose that was beneficial to well-being and social health for all participants. Community-based initiatives that provide opportunities for peer support for the person with the diagnosis and the care partner are essential so that people living with dementia may rebuild their confidence as well as retaining opportunities to socialise.
(Edited publisher abstract)
Subject terms:
carer views, dementia, co-production, user views, user participation, social isolation, wellbeing, evaluation, peer support;
Health and Social Care in the Community, 30(1), 2022, pp.114-123.
Publisher:
Wiley
Evidence exists relating to music-based initiatives and positive health outcomes for people living with dementia who can access them. Yet, knowledge about the impact of ‘music-making’ on the well-being of community-dwelling people with dementia is limited. Much of the existing evidence about the benefits of music is focused on care home settings where initiatives can be readily applied as part...
(Edited publisher abstract)
Evidence exists relating to music-based initiatives and positive health outcomes for people living with dementia who can access them. Yet, knowledge about the impact of ‘music-making’ on the well-being of community-dwelling people with dementia is limited. Much of the existing evidence about the benefits of music is focused on care home settings where initiatives can be readily applied as part of a weekly schedule of activities. Therefore, this initiative aimed to provide opportunities to participate in music-making, to increase social interaction and ultimately well-being in a community environment. Ten music-making session were scheduled for community-dwelling people living with dementia and care-partners, once a month between September 2019 and March 2020. Three sessions did not take place due to Covid19. Eighteen participants consented to take part including seven people living with dementia, five care-partners and six former care-partners. Baseline semi-structured interviews explored the lived experience of music and expectations of the upcoming music-making cafes. Self-report questionnaires captured ‘in the moment’ experiences of each music-making cafe. Follow-up semi-structured interviews explored the impact of music-making on participants' self-reported well-being. Interviews were transcribed verbatim and analysed thematically. The findings demonstrate that participating in the music-making café benefitted the self-reported well-being of participants in three ways: first, a sense of camaraderie that enabled the facilitation of connections with others; second, creating opportunities to ‘level the playing field’ by always assuming a person's strengths and abilities; and third, group participation in music-making meets a need for meaningful musical experiences. We conclude that participating in music-making is a powerful medium to promote well-being for community-dwelling people living with dementia and care-partners.
(Edited publisher abstract)
Subject terms:
music, dementia, music therapy, wellbeing, community care, independent living, staff views, qualitative research;
Dementia: the International Journal of Social Research and Practice, 20(6), 2021, pp.2133-2151.
Publisher:
Sage
Promoting access to heritage settings has been acknowledged as a way to promote well-being in the United Kingdom for people living with dementia and their care partners. Yet there is a lack of information available internationally on the contribution of heritage sites to promote well-being and social inclusion for those living with dementia. This study addresses this gap by reporting...
(Edited publisher abstract)
Promoting access to heritage settings has been acknowledged as a way to promote well-being in the United Kingdom for people living with dementia and their care partners. Yet there is a lack of information available internationally on the contribution of heritage sites to promote well-being and social inclusion for those living with dementia. This study addresses this gap by reporting on the impact for 48 people of participating in the ‘Sensory Palaces’ (SP) programme run by Historic Royal Palaces at Hampton Court and Kew Palaces in the United Kingdom. Two primary data sources were used; post-session interviews involving 30 participants (the person living with dementia and/or their care partners), and 131 sets of self-complete pre- and post-session mood questionnaires administered directly before and after SP session attendance. Analysis of the data sets is presented under three themes: enjoyment and engagement; connecting and learning and place, space and time. The findings demonstrate that participants highly valued the heritage sessions and reported positively on the impact this had for their individual well-being and their relationships with one another. This study highlights the opportunity for heritage sites to contribute to promoting well-being for people living with dementia.
(Edited publisher abstract)
Dementia: the International Journal of Social Research and Practice, 20(2), 2021, pp.444-463.
Publisher:
Sage
Current international dementia care policies focus on creating ‘dementia-friendly’ communities that aim to support the social inclusion of people with dementia. Although it is known that the geo-socio-cultural rural environment can impact on the experiences of people living with dementia, this can be overlooked when exploring and implementing social inclusion policies. This paper addresses...
(Edited publisher abstract)
Current international dementia care policies focus on creating ‘dementia-friendly’ communities that aim to support the social inclusion of people with dementia. Although it is known that the geo-socio-cultural rural environment can impact on the experiences of people living with dementia, this can be overlooked when exploring and implementing social inclusion policies. This paper addresses an important gap in the literature by exploring the perceptions of daily life for older men (65+ years) living with dementia in three rural areas of England. Open interviews were conducted with 17 rural-dwelling older men with dementia and the data elicited were analysed thematically to construct two higher order themes. The first focussed on ‘Cracking on with life in a rural idyll’ and highlighted the benefits of rural living including the pleasant, natural environment, supportive informal networks and some accessible formal dementia support. The second presented ‘A challenge to the idyll’ and outlined difficulties the men faced including a lack of dementia awareness amongst their family and the wider rural community as well as the physical and internal motivational barriers associated with the rural landscape and their dementia. The findings were interpreted through a lens of social inclusion and demonstrated how the geo-socio-cultural rural environment both enabled and inhibited facets of the men’s experiences of life in their communities. Based on these findings, the paper offers recommendations for practitioners, researchers and policy makers wishing to promote social inclusion in rural-dwelling older men living with dementia.
(Edited publisher abstract)
Subject terms:
rural areas, older people, men, dementia, social inclusion;
Research has suggested ecopsychosocial initiatives can promote a sense of wellbeing and inclusion in people with dementia. However, few studies have elucidated the ‘active mechanisms’ whereby such initiatives can achieve these outcomes, so hindering their generalisability. This is particularly pertinent when seeking to support community-dwelling older men with dementia who are reluctant to engage...
(Edited publisher abstract)
Research has suggested ecopsychosocial initiatives can promote a sense of wellbeing and inclusion in people with dementia. However, few studies have elucidated the ‘active mechanisms’ whereby such initiatives can achieve these outcomes, so hindering their generalisability. This is particularly pertinent when seeking to support community-dwelling older men with dementia who are reluctant to engage with traditional health and social care initiatives. This paper reports on a study that drew from the principles of Participatory Action Research to explore the ‘active mechanisms’ of a technological initiative for older men (65+ years) with dementia in rural England. An individually tailored, male-only initiative, using off-the-shelf computer game technology (e.g. iPad, Nintendo Wii and Microsoft Kinect) was delivered over a nine-week period. Multiple qualitative methods were employed, including: focus groups, open interviews and extensive reflective field notes, to gather data from the perspective of 22 men, 15 care partners and five community volunteers. The data were analysed thematically and interpreted using a masculinity lens. Three mechanisms contributed to the initiative's success: the use of the technology, the male-only environment and the empowering approach adopted. The paper argues that initiatives aimed at community-dwelling older men with dementia would be advised to consider these gendered experiences and ensure participants can maximise their masculine capital when participating in them, by providing enabling activities, non-threatening environments and empowering approaches of delivery.
(Edited publisher abstract)
Dementia: the International Journal of Social Research and Practice, 18(2), 2019, pp.771-775.
Publisher:
Sage
This paper reports on a pilot study evaluating the impact of a series of interactive and educational maritime archaeological sessions for people with dementia. A typical archaeological approach was adopted including excavations, recovery and reconstruction of artefacts. Findings from this study demonstrate the importance of providing information, delivering alternative activities, enabling...
(Edited publisher abstract)
This paper reports on a pilot study evaluating the impact of a series of interactive and educational maritime archaeological sessions for people with dementia. A typical archaeological approach was adopted including excavations, recovery and reconstruction of artefacts. Findings from this study demonstrate the importance of providing information, delivering alternative activities, enabling educational opportunities and offering support to and for people living with dementia. The authors' findings further illustrate that people with dementia can be included in maritime archaeology and that including people with dementia in heritage-based initiatives is possible.
(Edited publisher abstract)
Subject terms:
dementia, innovation, social activities, social inclusion, evaluation, education, relationships;
Purpose: The perspectives of people with dementia and their care partners regarding ‘extra care’ housing are currently unknown.
This paper will report findings of a consultation study exploring the perceived barriers and facilitators of a relocation to extra care housing, from the perspective of people living with dementia, and their care partners.
Design/methodology/approach: Fieldwork...
(Publisher abstract)
Purpose: The perspectives of people with dementia and their care partners regarding ‘extra care’ housing are currently unknown.
This paper will report findings of a consultation study exploring the perceived barriers and facilitators of a relocation to extra care housing, from the perspective of people living with dementia, and their care partners.
Design/methodology/approach: Fieldwork consisted of paired or 1-1 interviews and small focus groups with potential users of an alternative model of extra care support for people living with dementia in the South of England. The consultation took place between June and August 2013. The interviews and focus groups were audio recorded, transcribed verbatim. The transcripts were analysed thematically.
Findings: Benefits of extra care were identified as the opportunity for couples to remain living together for longer, creating a supportive, dementia-friendly community, and a reduction in the strain experienced by the care partners. Barriers centred on a sense of loss, stress and uncertainty. Living and caring at home was perceived as preferable to shared care.
Research limitations/implications: The findings presented here have limited generalizability for two reasons. First the shared care approach consulted on was very specific. Second our participants form a purposive sample and as such are not representative of a wider population. Despite best intentions the voice of people with dementia are under reported in this consultation. Only one person with early on-set dementia was interviewed and the remaining two people with dementia were interviewed alongside their care partner.
Practical implications: The findings cast doubt on the viability of extra care facilities, designed for couples living with dementia, if extra care continues to be conceptualised and marketed as a preventative lifestyle choice. The findings indicate the value of consulting with people with dementia, and their care partners, when designing new forms of housing with care specifically for people living with dementia.
Originality/value: This paper contributes to the body of literature, exploring the feasibility of new and innovative alternative care and housing options, for people with dementia. This paper is one of the first to explore extra care as a housing and social care option for couples with dementia.
(Publisher abstract)
Subject terms:
dementia, carers, service users, user views, informal care, extra care housing, evaluation;
NYMAN Samuel Robert, INNES Anthea, HEWARD Michelle
Journal article citation:
Aging and Mental Health, 21(9), 2017, pp.961-967.
Publisher:
Taylor and Francis
Objectives: This study explored the social care and support needs of people with dementia and visual impairment, and the barriers and facilitators for meeting these needs.
Method: Twenty-six semi-structured interviews were conducted: 21 joint and 5 individual interviews with the person with dementia and visual impairment (n=4) or their family/paid carer (n=1). Interviews were analysed...
(Edited publisher abstract)
Objectives: This study explored the social care and support needs of people with dementia and visual impairment, and the barriers and facilitators for meeting these needs.
Method: Twenty-six semi-structured interviews were conducted: 21 joint and 5 individual interviews with the person with dementia and visual impairment (n=4) or their family/paid carer (n=1). Interviews were analysed thematically.
Results: Three themes are presented. (1) Social care needs: having dementia can reduce an individual's ability to cope with their visual impairment, and lead to increased dependency and reduced daily stimulation. (2) Barriers to using technology to meet social care needs: difficulties were reported with learning to use unfamiliar technology and the cost of visual impairment aids, and for some, the presence of dementia made visual impairment aids unusable and vice versa. (3) Familiarity as a facilitator for meeting social care needs: living at home or taking furnishings and ornaments into a new home facilitated independence, and continuity of paid carers/volunteers facilitated the caring relationship between the individual and staff/volunteer.
Conclusion: Care workers will better serve older people if they are aware of the social care and support needs that arise from having both dementia and visual impairment.
(Edited publisher abstract)
Subject terms:
dementia, visual impairment, needs, assistive technology, community care, intervention, user views;
Dementia: the International Journal of Social Research and Practice, 16(3), 2017, pp.315-329.
Publisher:
Sage
...residences if these larger, and often more institutional, environments were designed to compensate for decreasing orientation skills. However, few existing dementia friendly design guidelines specifically address orientation and wayfinding. Those that do are often based on custom, practice or intuition and not well integrated with psychological and neuroscientific knowledge or navigation research
(Publisher abstract)
Alzheimer's disease results in marked declines in navigation skills that are particularly pronounced in unfamiliar environments. However, many people with Alzheimer's disease eventually face the challenge of having to learn their way around unfamiliar environments when moving into assisted living or care-homes. People with Alzheimer's disease would have an easier transition moving to new residences if these larger, and often more institutional, environments were designed to compensate for decreasing orientation skills. However, few existing dementia friendly design guidelines specifically address orientation and wayfinding. Those that do are often based on custom, practice or intuition and not well integrated with psychological and neuroscientific knowledge or navigation research, therefore often remaining unspecific. This paper discusses current dementia friendly design guidelines, reports findings from psychological and neuropsychological experiments on navigation and evaluates their potential for informing design guidelines that decrease spatial disorientation for people with dementia.
(Publisher abstract)
Subject terms:
dementia, care homes, Alzheimers disease, building design, skills, needs, mobility;
Dementia: the International Journal of Social Research and Practice, 15(6), 2016, pp.1643-1665.
Publisher:
Sage
Leisure has emerged as a prominent research theme within the growing body of knowledge on dementia, with a focus on physical activity. Yet participation in any form of leisure presupposes an ability to freely choose to partake in activities and to negotiate one’s way around key barriers. In the case of dementia, the ability to undertake leisure activities is subject to a greater range of barriers...
(Publisher abstract)
Leisure has emerged as a prominent research theme within the growing body of knowledge on dementia, with a focus on physical activity. Yet participation in any form of leisure presupposes an ability to freely choose to partake in activities and to negotiate one’s way around key barriers. In the case of dementia, the ability to undertake leisure activities is subject to a greater range of barriers, structured in a hierarchical manner that contributes to social exclusion if not addressed. This study based on focus groups with people with dementia and their family members conducted in Dorset, UK illustrates a range of barriers to leisure participation. How to create or maintain leisure opportunities for those living with dementia where households affected by dementia do not adopt avoidance behaviour, compounding a sense of isolation and exclusion is a challenge. Leisure can be an important strategy framed as a form of resistance to the social disabilities experienced by those living with dementia and it is potentially isolating impact.
(Publisher abstract)
Subject terms:
service users, dementia, participation, carers, informal care, leisure activities, older people, social exclusion, user views, leisure;