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‘You come because it is an interesting place’: the impact of attending a heritage programme on the well-being of people living with dementia and their care partners
- Authors:
- INNES Anthea, et al
- Journal article citation:
- 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 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)
Experiences of rural life among community-dwelling older men with dementia and their implications for social inclusion
- Authors:
- HICKS Ben, INNES Anthea, NYMAN Samuel R.
- Journal article citation:
- 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 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)
Tales of The Sea: connecting people with dementia to the UK heritage through maritime archaeology: innovative practice
- Authors:
- CUTLER Clare, PALMA Paola, INNES Anthea
- Journal article citation:
- 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 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)
Decreasing spatial disorientation in care-home settings: how psychology can guide the development of dementia friendly design guidelines
- Authors:
- O’MALLEY Mary, INNES Anthea, WIENER Jan M.
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 16(3), 2017, pp.315-329.
- Publisher:
- Sage
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)
Barriers to leisure participation for people with dementia and their carers: an exploratory analysis of carer and people with dementia’s experiences
- Authors:
- INNES Anthea, et al
- Journal article citation:
- 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, 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)
Facilitating independence: the benefits of a post-diagnostic support project for people with dementia
- Authors:
- KELLY Fiona, INNES Anthea
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 15(2), 2016, pp.162-180.
- Publisher:
- Sage
Providing support in the form of information, advice and access to services or social events is promoted as beneficial for people newly diagnosed with dementia and their families. This paper reports on key findings from an evaluation of a post-diagnostic support pilot project in Scotland addressing local service gaps, namely information provision, emotional and practical support and maintaining community links. Twenty-seven participants (14 people newly diagnosed with dementia and 13 family carers) were interviewed at two time points: T1 shortly after joining the pilot project and T2 approximately six months later, to ascertain their views on existing services and the support offered by the pilot project. A comparative thematic analysis revealed that the project facilitated increased independence (associated with increased motivation and self-confidence) of people with dementia. The project illustrates what can be achieved if resources are targeted at providing individualised post-diagnostic support, particularly where there are service delivery gaps. (Edited publisher abstract)
Dementia diagnosis and post-diagnostic support in Scottish rural communities: experiences of people with dementia and their families
- Authors:
- INNES Anthea, SZYMCZYNSKA Paulina, STARK Cameron
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 13(2), 2014, pp.233-247.
- Publisher:
- Sage
This paper explores the reported difficulties and satisfactions with diagnostic processes and post-diagnostic support offered to people with dementia and their families living in the largest remote and rural region in Scotland. A consultation with 18 participants, six people with dementia and 12 family members, was held using semi-structured interviews between September and November 2010. Three points in the diagnostic process were explored: events and experiences pre-diagnosis; the experience of the diagnostic process; and post-diagnostic support. Experiences of people with dementia and their carers varied at all three points in the diagnostic process. Participant experiences in this study suggest greater efforts are required to meet Government diagnosis targets and that post-diagnostic support needs to be developed and monitored to ensure that once a diagnosis is given people are well-supported. Without post-diagnostic provision Government targets for diagnosis are just that, quota targets, rather than a means to improve service experiences. (Publisher abstract)
Developing theoretical understandings of dementia and their application to dementia care policy in the UK
- Authors:
- INNES Anthea, MANTHROPE Jill
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 12(6), 2013, pp.682-696.
- Publisher:
- Sage
This paper discusses three broad theoretical models which underpin dementia care policy (as well as practice and research): biomedical, psycho-social and social-gerontological. The models are critically assessed and discussed in relation to illustrative examples of dementia policy across three policy regions of the devolved UK. The contribution and implications of theoretical models of dementia policy highlight the importance of recognising how different theoretical understandings of dementia influence dementia policy. The development and improvement of policy and practice in the area of dementia care require an understanding of the often implicit theoretical approaches to dementia. (Edited publisher abstract)
The organisation of dementia care by families in Malta: the experiences of family caregivers
- Authors:
- INNES Anthea, ABELA Stephen, SCERRI Charles
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 10(2), May 2011, pp.165-184.
- Publisher:
- Sage
Demographic changes have led to an increase in the number of people with dementia at a time when there are less carers available to provide care. This paper specifically examines the experiences of dementia family caregivers in Malta. The study design was essentially exploratory as this is the first funded social research on dementia on the island. Semi-structured interviews were conducted in 2008 with 17 caregivers sourced from an outpatient memory clinic. A thematic analysis was guided by the questions – what are the experiences of family caregiving in Malta, and what impact does caregiving have for individual/family life? Three key findings are discussed, namely: the organisation of family care in Malta; the use of formal services; and the dislocation of dementia caregiving experiences from wider community life. This paper raises questions about support mechanisms currently available in Malta while presenting cross-national learning opportunities to apply established knowledge to Malta.
Dementia studies: a social science perspective
- Author:
- INNES Anthea
- Publisher:
- Sage
- Publication year:
- 2009
- Pagination:
- 195p., bibliog.
- Place of publication:
- Los Angeles, CA
There has been a tendency in dementia studies to focus on individual psychosocial dynamics. Here the author takes a wider view and approaches the subject from a social science perspective. The book critically examines the main approaches to understanding dementia (bio-medical, social-psychological and socio-gerontological) and the main principles and ideologies of care, drawing widely on the research literature in these and related fields, such as disability studies and politics. The author provides an historical and critical evaluation of where and why the study of dementia began, how it has developed in the areas of research, practice, and policy and what needs to be done with this knowledge in order to create social change that improves the lives of people with dementia and their families. The gap between the utopian aspirations of care and the reality of care are discussed, opening up a series of questions about knowledge and treatment of dementia. The book argues for a transition from an emphasis upon the individual or particular care services to the wider social, cultural and economic context. It is expected to be of value to students of nursing, sociology of health and illness, social work and social gerontology, as well as academics and those personally affected by the dementia.