Health & Social Care in The Community, Feb 10, 2023
People with dementia and their care partners report a lack of support, treatment, and information... more People with dementia and their care partners report a lack of support, treatment, and information, fragmented services, and a lack of inclusion in decisions about their care. Care planning may address these issues; however, there is scarce literature on the process or benefts of care planning for people with dementia. Tis review describes the literature on care planning for communitydwelling people with dementia and their care partners. A systematic scoping methodology was followed to identify the research questions, identify relevant documents, select relevant documents, chart the data, and collate, summarise, and report the results. 31 full-text documents published between 2010 and May 2020 were identifed and reviewed. Seven were guidelines, seven were expert opinion pieces, 11 were intervention studies, and six were descriptive studies. Te topics and process of care planning varied depending on the service context (e.g., memory clinic, home care, and primary care). Care planning was presented as a component of case management in 15 papers. Six of the 11 intervention studies reported positive outcomes, one showed no improvement, and one did not evaluate outcomes for people with dementia or their care partners. Of the six with positive outcomes, four evaluated care planning in the context of care management. Tere is limited evidence that care planning alone improves outcomes for people with dementia and their care partners. It is unclear whether it may have benefts when combined with care management.
International journal of qualitative methods, 2023
A deficit framing continues to surround the perceived capabilities of people with dementia to com... more A deficit framing continues to surround the perceived capabilities of people with dementia to comprehend and engage with cartographic maps. While some people with dementia might experience issues with wayfinding and spatial orientation, this has frequently been unfairly extended to all people living with dementia. From the perspective of qualitative research, the potentials for how mapping might contribute methodologically to understanding how some people with dementia negotiate and experience place has yet to be fully realised. A nascent turn towards geographic concepts of space and place has seen social health and dementia researchers acknowledging the vitality of place and neighbourhoods for understanding how everyday life unfolds relationally for people with dementia. However, creative methods to capture these spatial experiences are needed. This paper describes the nature of the scaffolds that supported involvement of people with dementia into a qualitative GIS project. These scaffolds were essential for supporting participants to trace out their narratives, histories, connections and barriers to engagement in their familiar neighbourhoods. We demonstrate via an Australian example how scaffolded sketch mapping interviews and crowdsourced maps offer tangible and evocative means to pin their lived experiences to the map. For place-based dementia research, qualitative GIS offers two paths forward. First, with the relevant scaffolds in place, the imaginative power of the map can engage people with dementia in qualitative research about the places they know and frequent. Second, spatial visualisations are imbued with political agency, acting as a conduit toward meaningful change in their local communities.
Giving voice to the lived experiences of people with dementia across the globe, including Austral... more Giving voice to the lived experiences of people with dementia across the globe, including Australia, Canada, Sweden and the UK, this critical and evidence-based collection engages with the realities of life for people living with dementia at home and within their neighbourhoods. This insightful text addresses the fundamental social aspects of environment, including place attachment, belonging and connectivity. The chapters reveal the potential and expose the challenges for practitioners and researchers as dementia care shifts to a neighbourhood setting. The unique ‘neighbourhood-centred’ perspective provides an innovative guide for policy and practice and calls for a new place-based culture of care and support in the neighbourhood
This article is an open access article distributed under the terms and conditions of the Creative... more This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY
Dementia, a global health priority, poses a disproportionately high risk to lesbian, gay, bisexua... more Dementia, a global health priority, poses a disproportionately high risk to lesbian, gay, bisexual and trans plus (LGBT+)/gender and sexuality diverse people. Despite this, little research has explored the lived experience of LGBT+ people with dementia or their care partners. This scoping review aims to understand what the literature reveals about their experiences, the ways in which their lives have been investigated, to inform future research, policy and practice. Using an established scoping review methodology, we identified seven papers that reported empirical research on the lived experience of LGBT+ people with dementia and their care partners. Only a single study reported on in two of the papers included people who were trans. This in itself reveals how rarely LGBT+ people are asked to speak about how dementia has shaped their lives in academic research. Our reflexive thematic analysis indicates that LGBT+ people with dementia and their care partners endure overlapping forms of disadvantage. This results in heightened experiences of fear and discrimination, lack of services and compounded social isolation. Importantly, while dementia was embodied as interference and loss by LGBT+ people, it was their gender and sexuality differences that provided solace, even in the face of disadvantage. Importantly, people's relationships with LGBT+ identities were framed as fundamental for safety, resilience and wellbeing, rather than a complicating or confounding factor in living with dementia.
Background The number of people with dementia in multicultural Australia is rapidly increasing. D... more Background The number of people with dementia in multicultural Australia is rapidly increasing. Despite its culturally diverse population, there is limited research about how people from ethnic minority groups understand and approach help-seeking and support for dementia. The aim of this study is to understand the perceptions of dementia symptoms, help-seeking and support in the Australian Arabic-speaking community. Methods This study used a cross-sectional qualitative research design. Individual, semi-structured interviews using projective stimulus techniques were used. Participants were three Arabic-speaking people aged over 70 who were experiencing cognitive changes or dementia symptoms, six carers, and five health or social care practitioners experienced in working with Arab-Australians. Phone or video chat interviews were conducted in either Arabic or English. Interviews were audiotaped, translated when needed, transcribed verbatim and inductive thematic analysis was undertaken. Findings Seven themes were identified. Participants described dementia as relating to symptoms of confusion and memory loss. Carers and older people believe that when older people are experiencing these cognitive symptoms, they must be cared for primarily by ensuring their happiness and comfort. Barriers to help-seeking and support included a lack of help-seeking due to cultural norms of family orientated care, families are unsure of where to seek help and fear of community judgement. Two ways to facilitate help-seeking and support were to build trust through culturally appropriate support and to educate the community. Conclusion Family, trust and community were identified as central pillars of the Australian-Arabic-speaking community. There is a need to increase dementia literacy in this community particularly around help-seeking and decreasing stigma. Education should be promoted by trusted community members and religious leaders. As the first point of professional contact, general practitioners need to be upskilled to support Arabic-speaking Australians around dementia.
License: This work is licensed under a Creative Commons Attribution 4.0 International License... more License: This work is licensed under a Creative Commons Attribution 4.0 International License. Read Full License carers within that region [21, 22]. The campaigns typically involve people living with dementia and carers, inclusive environmental design and public education to reduce stigma and raise awareness [21, 22]. The overarching aim of this project was to improve post-diagnostic support in the 12 months after dementia diagnosis for people living with dementia and carers in Australia, United Kingdom (UK), Canada, the Netherlands and Poland. In Australia, the campaign focused on changing health and social care professional behaviour around communicating the diagnosis and provision of post-diagnostic support information on adjustment and management of dementia and available services for people with dementia and family carers. This paper reports on the process evaluation of the Australian campaign. Methods The Campaign Brand and campaign development The campaign was informed by interviews and surveys with people diagnosed with dementia and carers from Australia, UK, Canada, the Netherlands and Poland, and a review of past and current dementia public health campaigns. The brand and website were codesigned with assistance of a marketing company and input and feedback from people living with dementia, carers, health and social care professionals and key stakeholders (e.g. peak body representatives, policy makers) in the ve countries. Australian co-designers and stakeholders had further input into the design of the Australian campaign including diagnosticians and providers of post diagnostic support. We emphasised the viewpoints and voices of people with dementia and carers throughout. Website user testing was undertaken (Zhang, under review). Context We designed an exclusively online campaign given COVID-19 restrictions. The campaign ran between October 2021 and June 2022. The Australian project team was based in New South Wales and comprised a well-networked academic team including an old age psychiatrist, psychologist, nurse, occupational therapist and public health academic with experience in health campaigning. Audience The primary target audience for the campaign were clinicians involved in diagnosis of dementia (i.e. diagnosticians-geriatricians, old age psychiatrists, neurologists, clinical and neuro-psychologists) and professionals involved in providing post-diagnostic supports (i.e. dementia clinical nurse consultants, dementia advisors). Key messages for professionals were: convey hope and when telling someone they have dementia; recommend and initiate postdiagnostic support including use of the Forward with Dementia website; and provide a management plan, appropriate referrals and follow-up appointment, refer back to general practitioner (GP) for execution of management plan. A secondary target audience were people with dementia, carers and family members active online. Key messages for people with dementia and carers were that: there are things you can do to live well with dementia; read information from the Forward with Dementia website; make a plan; and proactively seek supports and treatments to manage your dementia. The campaign program logic is presented in Fig. 1. Campaign activities Key messages were promoted throughout the campaign via: webinars, website content, weekly website blog and social media sharing (Twitter, Facebook, LinkedIn), monthly eNewsletters, media coverage of the launch, Google advertising, Facebook advertising, promotion through partner organisations' (e.g. Dementia Australia, Royal Australian and New Zealand College of Psychiatrists) newsletters and events, and promotion via professional contacts.
Context-Despite the lifesaving benefits of organ and tissue donation, a worldwide shortage of sui... more Context-Despite the lifesaving benefits of organ and tissue donation, a worldwide shortage of suitable and registered donors exists. Although the reasons for this shortage are multifactorial, it has been recognized that distinct barriers to registration, family discussion, and consent that require targeted intervention and action are present among minority cultural, religious, and immigrant communities. Objective-To explore the knowledge, attitudes, and beliefs of 3 orthodox religious communities in Australia (Macedonian, Greek, and Serbian Orthodox) and determine the implications for engaging with these communities to improve knowledge, attitudes, family discussion, and the ability to make an informed decision about donation. Design-Qualitative approach using focus groups moderated by researchers and bicultural health workers with the assistance of accredited interpreters. Participants-98 adult members of the Greek, Macedonian, and Serbian Orthodox communities in the Illawarra region of New South Wales, Australia. Results-Clear barriers to discussing and making an informed decision about organ and tissue donation were identified. Knowledge of processes and procedures was low and discussion about death (and organ and tissue donation) with family members and loved ones was considered taboo. Despite these barriers, all 3 communities expressed a desire for more information and engagement. Of particular interest were the perspectives of 3 types of "experts": medical, religious, and other community members (who had experience with the organ and tissue donation system). Future programs designed for orthodox religious communities should consider the need for active strategies that facilitate information sharing and engagement between community members and these 3 types of experts.
Objectives: The provision of respite is consistently identified by carers of people with dementia... more Objectives: The provision of respite is consistently identified by carers of people with dementia as one of their critical unmet care needs, and the overall proportion who use available respite programs tends to be low. In Australia this is likely to be the result of numerous complex and interacting factors including: a complex and fragmented service environment; carers' beliefs and attitudes about services; and their beliefs about their own caring responsibilities. Carers' use of support services can also be influenced by perceptions of poor service quality, lack of availability, cost, and a lack of flexibility in service arrangements. Whilst the delivery of flexibility is consistently highlighted as critical to carers, there is currently a lack of clarity in regards to what domains are most important when designing and delivering flexible services. To fill this gap, this paper reports on a review of the academic and grey literature. Iterative coding was undertaken and five domains of flexibility were identified (location, timing, providers, activities and funding) providing insights into flexible respite practices for three service types (day care centres, in-home services and residential respite care). Results from the review suggest that aspects of flexibility vary by service type and across settings. The implications for respite policy and practice are discussed.
Background: It is important to involve older people in evaluating public programmes that affect t... more Background: It is important to involve older people in evaluating public programmes that affect their lives. This includes those with physical and cognitive impairments (such as dementia) who may need support to live at home. Many countries have implemented new approaches to support older people to live well at home for longer. However, it can be challenging to involve disabled people in service evaluation, so we are unclear whether services are meeting their needs. Aim: This study explored how a cascading methodology, offering different supports enabled the involvement of home care users with cognitive and physical impairments in the assessment of their care-related quality of life. Method: We used multiple tools from the Adult Social Care Outcomes Toolkit (ASCOT) with n = 63 older adults who were recipients of home care in the Illawarra. We also offered different physical and cognitive supports as needed. Results: We started with the standard ASCOT questionnaire to assess the care-related quality of life, but then offered alternative formats (including Easy Read) and supports (including physical and cognitive assistance) if the older person needed them to participate. This allowed us to involve a greater diversity of older people in the evaluation, and changed what we found out about whether their care needs were being met. Conclusion: There is a need to implement more flexible and inclusive methods to increase the involvement of vulnerable users of long-term care in the assessment of service outcomes. This is important to ensure that the perspectives of all service users inform the delivery of person-centred care. It is also critical to understand the extent to which programmes are meeting the needs of vulnerable service users. Patient or Public Contribution: Service users with dementia were involved in the design of the 'Easy Read' questionnaire used in the study.
This chapter explains how the book has demonstrated the diversity of theoretical and conceptual a... more This chapter explains how the book has demonstrated the diversity of theoretical and conceptual approaches to people living with dementia. The idea of a neighbourhood implies an urban bias that holds particular meaning within Global North nations, which also largely undermines the rural experience of living with dementia. Neighbourhood, then, becomes a slippery concept that simultaneously covers perspectives and lived phenomena. The chapter acknowledges how the neighbourhood perspective has limitations to the emplaced lives of people with dementia. Additionally, intersectional understanding helped spark recognition of the significance of diversity of people with dementia. However, silence remains the lived experience of most people living with dementia. The chapter also includes possible improvements to policies, research, and practices addressing dementia.
There is a critical need for new ways to illuminate the geospatial context of the lived experienc... more There is a critical need for new ways to illuminate the geospatial context of the lived experience of people with dementia in their local neighbourhoods. This chapter reports on research that used qualitative geographic information systems (GIS) to understand experiences of place for people with dementia when they are ‘out and about’ in their local community. Conducted in Kiama, an Australian seaside town popular with retirees, the research aimed to understand the geospatial elements of these movements using two qualitative mapping methods: semi-structured, sketch mapping interviews and a crowdsourced online map for wider publics. Results provided grounded understandings of the everyday usage of a range of important places, including physical and social settings that variously supported or hindered civic participation and social engagement. Crowdsourced online maps, while less rich in detail, supported access to map-making. The resulting data was useful to inform advocacy and local targets for environmental action. Research using qualitative GIS provided a much-needed geospatial element and was a valuable complementary method to interviewing and walk-arounds, foregrounding how the everyday lives of people living with dementia are constituted relationally through social and material interactions in place.
Health & Social Care in The Community, Feb 10, 2023
People with dementia and their care partners report a lack of support, treatment, and information... more People with dementia and their care partners report a lack of support, treatment, and information, fragmented services, and a lack of inclusion in decisions about their care. Care planning may address these issues; however, there is scarce literature on the process or benefts of care planning for people with dementia. Tis review describes the literature on care planning for communitydwelling people with dementia and their care partners. A systematic scoping methodology was followed to identify the research questions, identify relevant documents, select relevant documents, chart the data, and collate, summarise, and report the results. 31 full-text documents published between 2010 and May 2020 were identifed and reviewed. Seven were guidelines, seven were expert opinion pieces, 11 were intervention studies, and six were descriptive studies. Te topics and process of care planning varied depending on the service context (e.g., memory clinic, home care, and primary care). Care planning was presented as a component of case management in 15 papers. Six of the 11 intervention studies reported positive outcomes, one showed no improvement, and one did not evaluate outcomes for people with dementia or their care partners. Of the six with positive outcomes, four evaluated care planning in the context of care management. Tere is limited evidence that care planning alone improves outcomes for people with dementia and their care partners. It is unclear whether it may have benefts when combined with care management.
International journal of qualitative methods, 2023
A deficit framing continues to surround the perceived capabilities of people with dementia to com... more A deficit framing continues to surround the perceived capabilities of people with dementia to comprehend and engage with cartographic maps. While some people with dementia might experience issues with wayfinding and spatial orientation, this has frequently been unfairly extended to all people living with dementia. From the perspective of qualitative research, the potentials for how mapping might contribute methodologically to understanding how some people with dementia negotiate and experience place has yet to be fully realised. A nascent turn towards geographic concepts of space and place has seen social health and dementia researchers acknowledging the vitality of place and neighbourhoods for understanding how everyday life unfolds relationally for people with dementia. However, creative methods to capture these spatial experiences are needed. This paper describes the nature of the scaffolds that supported involvement of people with dementia into a qualitative GIS project. These scaffolds were essential for supporting participants to trace out their narratives, histories, connections and barriers to engagement in their familiar neighbourhoods. We demonstrate via an Australian example how scaffolded sketch mapping interviews and crowdsourced maps offer tangible and evocative means to pin their lived experiences to the map. For place-based dementia research, qualitative GIS offers two paths forward. First, with the relevant scaffolds in place, the imaginative power of the map can engage people with dementia in qualitative research about the places they know and frequent. Second, spatial visualisations are imbued with political agency, acting as a conduit toward meaningful change in their local communities.
Giving voice to the lived experiences of people with dementia across the globe, including Austral... more Giving voice to the lived experiences of people with dementia across the globe, including Australia, Canada, Sweden and the UK, this critical and evidence-based collection engages with the realities of life for people living with dementia at home and within their neighbourhoods. This insightful text addresses the fundamental social aspects of environment, including place attachment, belonging and connectivity. The chapters reveal the potential and expose the challenges for practitioners and researchers as dementia care shifts to a neighbourhood setting. The unique ‘neighbourhood-centred’ perspective provides an innovative guide for policy and practice and calls for a new place-based culture of care and support in the neighbourhood
This article is an open access article distributed under the terms and conditions of the Creative... more This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY
Dementia, a global health priority, poses a disproportionately high risk to lesbian, gay, bisexua... more Dementia, a global health priority, poses a disproportionately high risk to lesbian, gay, bisexual and trans plus (LGBT+)/gender and sexuality diverse people. Despite this, little research has explored the lived experience of LGBT+ people with dementia or their care partners. This scoping review aims to understand what the literature reveals about their experiences, the ways in which their lives have been investigated, to inform future research, policy and practice. Using an established scoping review methodology, we identified seven papers that reported empirical research on the lived experience of LGBT+ people with dementia and their care partners. Only a single study reported on in two of the papers included people who were trans. This in itself reveals how rarely LGBT+ people are asked to speak about how dementia has shaped their lives in academic research. Our reflexive thematic analysis indicates that LGBT+ people with dementia and their care partners endure overlapping forms of disadvantage. This results in heightened experiences of fear and discrimination, lack of services and compounded social isolation. Importantly, while dementia was embodied as interference and loss by LGBT+ people, it was their gender and sexuality differences that provided solace, even in the face of disadvantage. Importantly, people's relationships with LGBT+ identities were framed as fundamental for safety, resilience and wellbeing, rather than a complicating or confounding factor in living with dementia.
Background The number of people with dementia in multicultural Australia is rapidly increasing. D... more Background The number of people with dementia in multicultural Australia is rapidly increasing. Despite its culturally diverse population, there is limited research about how people from ethnic minority groups understand and approach help-seeking and support for dementia. The aim of this study is to understand the perceptions of dementia symptoms, help-seeking and support in the Australian Arabic-speaking community. Methods This study used a cross-sectional qualitative research design. Individual, semi-structured interviews using projective stimulus techniques were used. Participants were three Arabic-speaking people aged over 70 who were experiencing cognitive changes or dementia symptoms, six carers, and five health or social care practitioners experienced in working with Arab-Australians. Phone or video chat interviews were conducted in either Arabic or English. Interviews were audiotaped, translated when needed, transcribed verbatim and inductive thematic analysis was undertaken. Findings Seven themes were identified. Participants described dementia as relating to symptoms of confusion and memory loss. Carers and older people believe that when older people are experiencing these cognitive symptoms, they must be cared for primarily by ensuring their happiness and comfort. Barriers to help-seeking and support included a lack of help-seeking due to cultural norms of family orientated care, families are unsure of where to seek help and fear of community judgement. Two ways to facilitate help-seeking and support were to build trust through culturally appropriate support and to educate the community. Conclusion Family, trust and community were identified as central pillars of the Australian-Arabic-speaking community. There is a need to increase dementia literacy in this community particularly around help-seeking and decreasing stigma. Education should be promoted by trusted community members and religious leaders. As the first point of professional contact, general practitioners need to be upskilled to support Arabic-speaking Australians around dementia.
License: This work is licensed under a Creative Commons Attribution 4.0 International License... more License: This work is licensed under a Creative Commons Attribution 4.0 International License. Read Full License carers within that region [21, 22]. The campaigns typically involve people living with dementia and carers, inclusive environmental design and public education to reduce stigma and raise awareness [21, 22]. The overarching aim of this project was to improve post-diagnostic support in the 12 months after dementia diagnosis for people living with dementia and carers in Australia, United Kingdom (UK), Canada, the Netherlands and Poland. In Australia, the campaign focused on changing health and social care professional behaviour around communicating the diagnosis and provision of post-diagnostic support information on adjustment and management of dementia and available services for people with dementia and family carers. This paper reports on the process evaluation of the Australian campaign. Methods The Campaign Brand and campaign development The campaign was informed by interviews and surveys with people diagnosed with dementia and carers from Australia, UK, Canada, the Netherlands and Poland, and a review of past and current dementia public health campaigns. The brand and website were codesigned with assistance of a marketing company and input and feedback from people living with dementia, carers, health and social care professionals and key stakeholders (e.g. peak body representatives, policy makers) in the ve countries. Australian co-designers and stakeholders had further input into the design of the Australian campaign including diagnosticians and providers of post diagnostic support. We emphasised the viewpoints and voices of people with dementia and carers throughout. Website user testing was undertaken (Zhang, under review). Context We designed an exclusively online campaign given COVID-19 restrictions. The campaign ran between October 2021 and June 2022. The Australian project team was based in New South Wales and comprised a well-networked academic team including an old age psychiatrist, psychologist, nurse, occupational therapist and public health academic with experience in health campaigning. Audience The primary target audience for the campaign were clinicians involved in diagnosis of dementia (i.e. diagnosticians-geriatricians, old age psychiatrists, neurologists, clinical and neuro-psychologists) and professionals involved in providing post-diagnostic supports (i.e. dementia clinical nurse consultants, dementia advisors). Key messages for professionals were: convey hope and when telling someone they have dementia; recommend and initiate postdiagnostic support including use of the Forward with Dementia website; and provide a management plan, appropriate referrals and follow-up appointment, refer back to general practitioner (GP) for execution of management plan. A secondary target audience were people with dementia, carers and family members active online. Key messages for people with dementia and carers were that: there are things you can do to live well with dementia; read information from the Forward with Dementia website; make a plan; and proactively seek supports and treatments to manage your dementia. The campaign program logic is presented in Fig. 1. Campaign activities Key messages were promoted throughout the campaign via: webinars, website content, weekly website blog and social media sharing (Twitter, Facebook, LinkedIn), monthly eNewsletters, media coverage of the launch, Google advertising, Facebook advertising, promotion through partner organisations' (e.g. Dementia Australia, Royal Australian and New Zealand College of Psychiatrists) newsletters and events, and promotion via professional contacts.
Context-Despite the lifesaving benefits of organ and tissue donation, a worldwide shortage of sui... more Context-Despite the lifesaving benefits of organ and tissue donation, a worldwide shortage of suitable and registered donors exists. Although the reasons for this shortage are multifactorial, it has been recognized that distinct barriers to registration, family discussion, and consent that require targeted intervention and action are present among minority cultural, religious, and immigrant communities. Objective-To explore the knowledge, attitudes, and beliefs of 3 orthodox religious communities in Australia (Macedonian, Greek, and Serbian Orthodox) and determine the implications for engaging with these communities to improve knowledge, attitudes, family discussion, and the ability to make an informed decision about donation. Design-Qualitative approach using focus groups moderated by researchers and bicultural health workers with the assistance of accredited interpreters. Participants-98 adult members of the Greek, Macedonian, and Serbian Orthodox communities in the Illawarra region of New South Wales, Australia. Results-Clear barriers to discussing and making an informed decision about organ and tissue donation were identified. Knowledge of processes and procedures was low and discussion about death (and organ and tissue donation) with family members and loved ones was considered taboo. Despite these barriers, all 3 communities expressed a desire for more information and engagement. Of particular interest were the perspectives of 3 types of "experts": medical, religious, and other community members (who had experience with the organ and tissue donation system). Future programs designed for orthodox religious communities should consider the need for active strategies that facilitate information sharing and engagement between community members and these 3 types of experts.
Objectives: The provision of respite is consistently identified by carers of people with dementia... more Objectives: The provision of respite is consistently identified by carers of people with dementia as one of their critical unmet care needs, and the overall proportion who use available respite programs tends to be low. In Australia this is likely to be the result of numerous complex and interacting factors including: a complex and fragmented service environment; carers' beliefs and attitudes about services; and their beliefs about their own caring responsibilities. Carers' use of support services can also be influenced by perceptions of poor service quality, lack of availability, cost, and a lack of flexibility in service arrangements. Whilst the delivery of flexibility is consistently highlighted as critical to carers, there is currently a lack of clarity in regards to what domains are most important when designing and delivering flexible services. To fill this gap, this paper reports on a review of the academic and grey literature. Iterative coding was undertaken and five domains of flexibility were identified (location, timing, providers, activities and funding) providing insights into flexible respite practices for three service types (day care centres, in-home services and residential respite care). Results from the review suggest that aspects of flexibility vary by service type and across settings. The implications for respite policy and practice are discussed.
Background: It is important to involve older people in evaluating public programmes that affect t... more Background: It is important to involve older people in evaluating public programmes that affect their lives. This includes those with physical and cognitive impairments (such as dementia) who may need support to live at home. Many countries have implemented new approaches to support older people to live well at home for longer. However, it can be challenging to involve disabled people in service evaluation, so we are unclear whether services are meeting their needs. Aim: This study explored how a cascading methodology, offering different supports enabled the involvement of home care users with cognitive and physical impairments in the assessment of their care-related quality of life. Method: We used multiple tools from the Adult Social Care Outcomes Toolkit (ASCOT) with n = 63 older adults who were recipients of home care in the Illawarra. We also offered different physical and cognitive supports as needed. Results: We started with the standard ASCOT questionnaire to assess the care-related quality of life, but then offered alternative formats (including Easy Read) and supports (including physical and cognitive assistance) if the older person needed them to participate. This allowed us to involve a greater diversity of older people in the evaluation, and changed what we found out about whether their care needs were being met. Conclusion: There is a need to implement more flexible and inclusive methods to increase the involvement of vulnerable users of long-term care in the assessment of service outcomes. This is important to ensure that the perspectives of all service users inform the delivery of person-centred care. It is also critical to understand the extent to which programmes are meeting the needs of vulnerable service users. Patient or Public Contribution: Service users with dementia were involved in the design of the 'Easy Read' questionnaire used in the study.
This chapter explains how the book has demonstrated the diversity of theoretical and conceptual a... more This chapter explains how the book has demonstrated the diversity of theoretical and conceptual approaches to people living with dementia. The idea of a neighbourhood implies an urban bias that holds particular meaning within Global North nations, which also largely undermines the rural experience of living with dementia. Neighbourhood, then, becomes a slippery concept that simultaneously covers perspectives and lived phenomena. The chapter acknowledges how the neighbourhood perspective has limitations to the emplaced lives of people with dementia. Additionally, intersectional understanding helped spark recognition of the significance of diversity of people with dementia. However, silence remains the lived experience of most people living with dementia. The chapter also includes possible improvements to policies, research, and practices addressing dementia.
There is a critical need for new ways to illuminate the geospatial context of the lived experienc... more There is a critical need for new ways to illuminate the geospatial context of the lived experience of people with dementia in their local neighbourhoods. This chapter reports on research that used qualitative geographic information systems (GIS) to understand experiences of place for people with dementia when they are ‘out and about’ in their local community. Conducted in Kiama, an Australian seaside town popular with retirees, the research aimed to understand the geospatial elements of these movements using two qualitative mapping methods: semi-structured, sketch mapping interviews and a crowdsourced online map for wider publics. Results provided grounded understandings of the everyday usage of a range of important places, including physical and social settings that variously supported or hindered civic participation and social engagement. Crowdsourced online maps, while less rich in detail, supported access to map-making. The resulting data was useful to inform advocacy and local targets for environmental action. Research using qualitative GIS provided a much-needed geospatial element and was a valuable complementary method to interviewing and walk-arounds, foregrounding how the everyday lives of people living with dementia are constituted relationally through social and material interactions in place.
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