Moving forward with dementia: an explorative cross-country qualitative study into post-diagnostic experiences.

OBJECTIVES: This explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland. METHOD: Qualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers. RESULTS: Twenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) 'Coming to terms with dementia' helped people deal with complex emotions to move forward. (3) 'The social network as a source of support' and (4) 'The challenges and realities of formal support' and impacted 'Coming to terms with dementia'. (2) 'Navigating life with dementia as a caregiver' highlights caregiver burden and was impacted by (4) 'The challenges and realities of formal support'. People were (5) 'Self-caring and preparing for tomorrow' as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences. CONCLUSION: Across countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia.

Forward with Dementia: process evaluation of an Australian campaign to improve post-diagnostic support.

BACKGROUND: Forward with Dementia is a co-designed campaign to improve communication of dementia diagnosis and post-diagnostic support. METHODS: Webinars, a website, social and traditional media, and promotions through project partners were used to disseminate campaign messages to health and social care professionals (primary audience) and people with dementia and carers (secondary audience). The campaign ran between October 2021 and June 2022, with 3-months follow-up. The RE-AIM framework was used for process evaluation. Measurements included surveys and interviews, a log of activities (e.g. webinars, social media posts) and engagements (e.g. attendees, reactions to posts), and Google Analytics. RESULTS: There were 29,053 interactions with campaign activities. More than three-quarters of professionals (n = 63/81) thought webinars were very or extremely helpful. Professionals and people with dementia and carers reported that the website provided appropriate content, an approachable tone, and was easy to use. Following campaign engagement, professionals planned to (n = 77/80) or had modified (n = 29/44) how they communicated the diagnosis and/or provided post-diagnostic information and referrals. Qualitative data suggested that the campaign may have led to benefits for some people with dementia and carers. CONCLUSIONS: Forward with Dementia was successful in terms of reach, appropriateness, adoption and maintenance for professionals, however flow-through impacts on people with dementia are not clear. Targeted campaigns can potentially change health professionals' communication and support around chronic diseases such as dementia.

Experiences of people with dementia and informal caregivers with post-diagnostic support: Data from the international COGNISANCE study.

OBJECTIVES: The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied. METHODS: A cross-sectional survey study in Australia, Canada, the Netherlands, Poland, and United Kingdom was carried out to examine people with dementia and informal caregivers experience with support (satisfaction with information, access to care, health literacy, and confidence in ability to live well with dementia). The separate surveys contained closed questions. Analysis consisted of descriptive statistics and Chi-square tests. RESULTS: Ninety people with dementia and 300 informal caregivers participated, and 69% of people with dementia and 67% of informal caregivers said support after diagnosis helped them deal more efficiently with their concerns. Up to one-third of people with dementia and informal caregivers were dissatisfied with information about management, prognosis, and strategies for living positively. Few people with dementia (22%) and informal caregivers (35%) received a care plan. People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, and were less often satisfied with access to care compared to informal caregivers. Informal caregivers who were satisfied with support were more satisfied with information and access to care compared to informal caregivers not satisfied with support. CONCLUSIONS: Experience of dementia support can be improved and people with dementia and informal caregiver differ in their experiences of support.

Exploring the usability, user experience and usefulness of a supportive website for people with dementia and carers.

PURPOSE: This study explores the usability, usefulness and user experience of the Forward with Dementia website for people with dementia and family carers, and identifies strategies to improve web design for this population. METHODS: The website was iteratively user-tested by 12 participants (five people with dementia, seven carers) using the Zoom platform. Data collection involved observations, semi-structured interviews and questionnaires. Integrative mixed-method data analysis was used, informed by inductive thematic qualitative analysis. RESULTS: Users of Version 1 of the website experienced web functionality, navigation and legibility issues. Strategies for desirable web design were identified as simplifying functions, streamlining navigation and decluttering page layouts. Implementation of strategies produced improvements in usability, user experience and usefulness in Version 2, with mean System Usability Scale scores improving from 15 to 84, and mean task completion improving from 55% to 89%. The user journey for people with dementia and carers overlapped, but each group had their own unique needs in the context of web design. CONCLUSIONS: The interplay between a website's content, functionality, navigation and legibility can profoundly influence user perceptions of a website. Dementia-related websites play an important role in informing audiences of management strategies, service availability and planning for the progression of dementia. Findings of this study may assist in guiding future web development targeting this population.

People with cognitive impairment can provide useful feedback on design and accessibility of websites, and their input should be obtained when developing digital applications for this group.This paper provides practical suggestions for website design features to improve function, legibility and navigation of websites for older people and people living with dementia.

Beliefs around help-Seeking and Support for Dementia in the Australian Arabic Speaking Community.

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.

Further development needed: models of post-diagnostic support for people with dementia.

PURPOSE OF REVIEW: There is increasing recognition of a service gap immediately after diagnosis for people with dementia and carers. This narrative review of models of post-diagnostic support focuses on recent developments and offers suggestions for future development. We present the current evidence for these models and consider the service components they provide against the recommendations of clinical guidelines and principles underpinning ideal post-diagnostic support. RECENT FINDINGS: Models of post-diagnostic support include a short-term support worker, ongoing support worker, centre-based support, primary care management, and specialist dementia clinics. Of these, specialist dementia clinics that include ongoing support workers provide most components of an ideal and timely post-diagnostic support framework, but may be more costly to implement universally. The greatest research evidence is for the benefits of long-term support models, specifically case management, though this does not necessarily include medical care or nonpharmacological interventions. There is sparce evidence for the benefits of short-term support worker models such as dementia advisers for people with dementia and carers. SUMMARY: Further development is needed to create whole-system models of dementia support which meet the needs of people with dementia and their carers, are timely, accessible and equitable, and can be implemented universally.

Australian National Aged Care Classification behaviour assessment and people living with dementia in residential aged care: Inclusive language for reform?

OBJECTIVE: To examine the language of the behaviour assessment in the new Australian National Aged Care Classification (AN-ACC) funding instrument. We explored whether the (BRUA) will support an inclusive and progressive approach for people living with dementia in residential aged care. METHODS: Databases were searched to identify publicly available literature relating to the development of the AN-ACC and BRUA, and hand searches of reference lists and selected websites were completed to identify additional grey literature, dementia language and best practice guidelines. Criteria for language use were extracted and compared with the BRUA in the light of the current national aged care reform agenda, as well as research with and perspectives of people with lived experience of dementia. RESULTS: The language within the BRUA did not align with international dementia language guidelines, and the content presented was disrespectful to those with lived experience. The assessment appears inconsistent with international best practices and is potentially discriminatory within the aged care cohort. CONCLUSIONS: The BRUA is intended as a funding instrument and not as a care planning tool, yet the negative representation of the lived experience of people with dementia embedded within a mandated assessment is likely to influence industry practice by condoning unsuitable language and attitudes amongst assessors, providers and staff. For better alignment with the current positive agenda for aged care reform in Australia, we recommend continued review and updating of this tool to avoid unintended consequences.

Translating reablement research for dementia practice: development of a handbook using implementation science.

PURPOSE: Reablement is a strategy recommended in clinical practice guidelines that could maximise functioning and quality of life in people living with dementia. This project sought to develop a practical handbook for health professionals illustrating the best, currently available evidence via newly-developed composite reablement programs. MATERIALS AND METHODS: Handbook development occurred over five phases, informed by Normalisation Process Theory: (1) literature review, (2) sector interviews to explore how handbook implementation may impact practice, (3) workshop to determine final handbook content, (4) reablement program synthesis and handbook development, and (5) dissemination and implementation planning to support optimal uptake and normalisation within the sector. RESULTS: Interviews (n = 22) identified sector support for development of the reablement handbook. Workshop (n = 24 participants) outcomes informed the final eight reablement programs sorted by functional outcomes (everyday living activities; mobility and physical function; and cognition and communication). A technical guide and consumer information booklet were developed to support the handbook. A comprehensive handbook implementation plan involving dynamic assessment and monitoring was developed. CONCLUSIONS: The reablement handbook provides a practical and accessible avenue to support function in people with dementia. Robust, coordinated dissemination, implementation and assessment of the new resource across a range of practice settings is now required.Implications for rehabilitationDementia leads to disability and dependence, impacting the person with dementia, their family and society.Reablement, an approach consistent with rehabilitation, is a strategy recommended in clinical practice guidelines that could maximise functional performance and quality of life in people living with dementia.This study describes development of a freely available evidence-informed reablement handbook designed to support delivery of high-quality reablement programs by allied health/nursing professionals for people living with dementia.Outcomes have potential to inform future implementation work and to ultimately improve the quality of services offered within the dementia sector.

Specialist residential dementia care for people with severe and persistent behaviours: A ten-year retrospective review.

Very severe behavioural and psychological symptoms of dementia (BPSD) have low prevalence but disproportionately poor outcomes for persons with dementia, others and systems of care, including inappropriate use of medication, tenuous accommodation, poor quality of life and increased costs. The Australian Government has established new Special Dementia Care Programmes (SDCPs) to provide interim care for up to 12 months for those with severe and persistent BPSD unsuitable for mainstream aged care. This 10-year retrospective review describes environmental design, governance, clinical processes, characteristics and outcomes for 80 residents of a similar-aged care mental health partnership SDCP. A key finding was that average length of stay was slightly over 12 months. All surviving residents except one were able to be transferred to mainstream aged care services. Doses of regular and PRN antipsychotic and anxiolytic medications were significantly reduced. SDCPs may have the potential to improve care and outcomes for this group of vulnerable older people.

Professionals' views and experiences in supporting decision-making involvement for people living with dementia.

BACKGROUND: The provision of supported decision-making for people living with disabilities is an emerging area of practice and rights-based law reform, and is required under international law. OBJECTIVES: This qualitative study aimed to understand how Australian health and legal professionals conceptualised their professional roles in the practice of providing decision-making support for people living with dementia. METHODS: The methods were informed by grounded theory principles. In-depth, semi-structured interviews were conducted with 28 health and legal professionals involved in providing care or services for people with dementia. Interviews explored how professionals described their practice of providing support for decision-making and how they conceptualised their roles. The analysis was underpinned by the theoretical perspective of symbolic interactionism. RESULTS: Participants described providing support across a range of decision domains, some of which were specific to their professional role. Four key themes were identified: 'establishing a basis for decision-making', 'the supportive toolbox', 'managing professional boundaries' and 'individualist advocacy versus relational practice'. Participants identified a range of generic and specialised techniques they used to provide support for people with dementia. These techniques were applied subject to resource limitations and perceived professional obligations and boundaries. A continuum of professional practice, ranging from 'individualist advocacy' to 'relational practice' describes the approaches adopted by different professionals. DISCUSSION: Professionals conceptualised their role in providing support for decision-making through the lens of their own profession. Differences in positioning on the continuum of 'individualist advocacy' through to 'relational practice' had practical implications for capacity assessment, engaging with persons with impaired decision-making capacity, and the inclusion of supporters and family members in decision-making processes. Further progress in implementing supported decision-making (including through law and policy reform) will require an understanding of these inter-professional differences in perceived roles relating to the practice of providing decision-making support.

Supporting community-dwelling older people with cognitive impairment to stay at home: A modelled cost analysis.

OBJECTIVE: To model the potential financial implications of Australian programs supporting cognitively impaired community-dwelling older people. METHODS: Markov cohort models of (a) an observational study of a residential dyadic training program for carers and people with dementia (GTSAH) and (b) a frailty intervention (FIT) in a cognitively impaired subgroup. Direct health and social welfare costs accrued over 5 years (2018 $AUD prices) were captured. GTSAH costs $3755, FIT costs $1834, and permanent residential aged care (P-RAC) costs $237 per day. RESULTS: Modelling predicted costs break even in approximately 5 months for GTSAH and 7 months for FIT, after which these interventions saved funds. The primary driver of savings was the P-RAC cost (discounted at 5%/annum), at $121 030 for GTSAH vs $231 193 for standard care; and $47 857 with FIT vs $111 359 for standard care. CONCLUSIONS: Programs supporting cognitively impaired community-dwelling older people could be financially beneficial; further evaluation and implementation would be a worthwhile investment.

Understanding in the Australian aged care sector of reablement interventions for people living with dementia: a qualitative content analysis.

BACKGROUND: Reablement has potential for enhancing function and independence in people with dementia. In order to enhance the use of evidence-based reablement in this population, this study sought to understand the current practices and needs of the sector around these interventions. METHODS: A purposive sample of 22 Australian aged and community-care providers participated in a semi-structured interview. Qualitative content analysis was applied to the data, with key themes interpreted within the context of the study aims: to explore (1) what reablement interventions are currently being offered to people living with dementia in Australia, and (2) what are key factors that will contribute to enhanced uptake of reablement interventions in dementia practice. RESULTS: Four themes emerged: (1) 'what reablement interventions are being offered', outlined a range of exercise and cognitive/social interventions, with only a proportion generated from a clear evidence-base, (2) 'what's in a name', illustrated the range of terms used to describe reablement, (3) 'whose role is it', highlighted the confusion around the range of health professionals involved in providing reablement interventions, and (4) 'perceived barriers and enablers to providing reablement to people living with dementia', described a range of factors that both hinder and support current reablement practice. CONCLUSIONS: Reablement interventions currently provided for people living with dementia in Australia are variable, with confusion around the definition of reablement, and apparently limited use of evidence-informed interventions. A multifaceted approach involving an evidence-informed and freely-accessible resource, and taking into account the varied levels of influence within the aged care sector would support uptake and implementation of reablement interventions for people living with dementia.

Understanding the Barriers and Enablers to Using Outdoor Spaces in Nursing Homes: A Systematic Review.

BACKGROUND AND OBJECTIVES: Despite acknowledged benefits of residents in nursing homes spending time outdoors, little is known about factors related to their use of outdoor space. This systematic review summarizes reported barriers and enablers to nursing home residents' use of outdoor spaces. RESEARCH DESIGN AND METHODS: Multiple databases were searched to May 2018. Qualitative or mixed methods studies describing barriers/enablers to use of outdoor areas by residents of nursing homes (aged 65 years and older), as reported by residents, staff, or family members were included. Study quality rating, thematic analysis, and stratified analyses were performed and confidence in findings assessed using GRADE-CERQual. RESULTS: Twenty-four studies were included. Nineteen collected data from residents, 15 from staff/caregivers, 7 from families. Major themes and key findings concerned: design of the outdoor area (importance of garden greenery and built features), safety concerns and staffing issues, weather and seasons (appropriate shade and shelter), design of the main building (easy to open doors and nearby access points) and social activities. CONCLUSIONS AND IMPLICATIONS: Providing gardens with seasonal plants and interactive features, weather protected seating, manageable doors at accessible thresholds, planned social activities, and appropriate clothing are fundamental to facilitate nursing home residents' access to the outdoors. Cultural change at an organizational level, addressing perceptions of safety as a barrier is important. Incorporation of the recommendations in this review by architects, facility managers, and policy makers in the design and management of nursing homes, may increase use of outdoor areas and improve the quality of life of residents. REGISTRATION: The protocol is registered in Prospero (CRD42018100249).

"A Real Bucket of Worms": Views of People Living with Dementia and Family Members on Supported Decision-Making.

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen individual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants' experiences with decision-making: "the person in relationship over time" and "maintaining involvement." Participant views on the practical issues associated with supported decision-making are addressed under the themes of "facilitating decision-making," "supported decision-making arrangements," "constraints on decision-making," and "safeguarding decision-making." While participants endorsed the principles of supported decision-making as part of their overarching strategy of "maintaining involvement" in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual "constraints on decision-making" also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a "spectrum approach" to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population.

The Going to Stay at Home program: combining dementia caregiver training and residential respite care.

ABSTRACTBackground:Caring for persons with dementia is stressful for family caregivers. Caregiver training programs and respite care can reduce this stress and help maintain persons with dementia living longer in the community. We evaluated a program that combines caregiver training with a residential respite stay. METHODS: In total, 90 dyads of persons with dementia and their caregivers, in groups of 3-6 dyads, volunteered to participate in a five-day residential training program and were followed-up 6 and 12 months later. The primary outcome was caregiver depression; secondary outcomes were measures of caregiver burden, unmet needs, person with dementia behavioral symptoms, and the quality of life and function. RESULTS: Caregiver depression and burden were unchanged, despite decreasing function in persons with dementia. Caregivers' unmet needs and behavioral symptoms in persons with dementia decreased significantly. Compared to a group of persons with dementia admitted for routine residential respite care, there was a marked reduction in permanent placement over 12 months. CONCLUSIONS: The Going to Stay at Home Program is a feasible and practicable model with benefits for caregivers and persons with dementia. It may lead to delay in institutionalization and may be applicable to other chronic conditions.

Consumer Directed Care in Australia: early perceptions and experiences of staff, clients and carers.

The study aimed to identify the shared issues and challenges being experienced by staff, their clients and informal carers, with the introduction of Consumer Directed Care (CDC). Secondary analysis was undertaken of data that had been initially collected, via semi-structured in-depth interviews, to inform the development of a discrete choice experiment. The raw staff and client/carer data were re-examined using an iterative inductive process. The analysis focused on locating the shared themes and differences between the participant groups based on their CDC experience. The data were also assessed for difficulties or barriers that impacted on the service. Four broad shared themes were derived: culture, role change, operational systems and resourcing, but with a range of diverse and sometimes conflicting sub-themes between the different participant groups. Differences can be linked to participant role in the service chain, with discordance emerging between what has been traditionally offered and what might be possible. This investigation occurred during the period in which services were transitioning from a traditional aged care service model to a new model of service provision requiring considerable industry change. We conclude that existing industry regulation, culture and practice supports an established service model in Australia that arguably makes translation of the objectives of CDC difficult.

Community care for the Elderly: Needs and Service Use Study (CENSUS): Who receives home care packages and what are the outcomes?

AIM: Investigate factors associated with waiting times for home care packages and outcomes for care recipients and carers. METHOD: Analyses of data collected every four months for 12 months from 55 community-dwelling older adults eligible for government-subsidised packaged care and their carers. RESULTS: Thirty of fifty-five participants were offered a package; they waited from one to 237 days. Baseline quality of life was higher for those offered a package than those not. Baseline care needs and unmet needs, neuropsychiatric symptoms, and cognitive decline did not predict offers. Package receipt compared to non-package receipt was associated with decreased carer burden over time but did not affect levels of unmet care needs, care needs or quality of life. CONCLUSIONS: Being offered a home care package was not based on waiting time or unmet care needs. Reforms should include a transparent system of wait listing and prioritisation.

Study protocol of the Going to Stay at Home program: evaluation of a residential carer training program to reduce dementia carer distress and burden.

BACKGROUND: Caring for a person with dementia has profound physical, psychological, social and financial impacts on the carer, while morbidity in carers has detrimental effects on outcomes in people with dementia. A 10-day hospital-based residential carer training program (BMJ 299(6712):1375-1379, 1989) delayed residential care placement, delayed mortality, reduced carer's psychological morbidity and lowered care costs. This study aims to evaluate the effects of a similar program adapted for use with residential respite. METHODS/DESIGN: This is a single-arm longitudinal study conducted at a residential aged care facility involving 100 people with dementia and their primary carers. In a 7-day residential program, carers will attend intensive training sessions while the people with dementia are engaged in daily activities. Data will be collected at the start of the residential program (baseline), at 6 months (post 1) and at 12 months (post 2) after completion of the program. The primary outcome is carer psychological distress. Secondary outcomes include carer burden, carer quality of life and time to residential care placement. DISCUSSION: This study will provide evidence on the effectiveness of the program in reducing carer distress and burden as well as delaying institutionalisation of the person with dementia, which may have important implications for policy.

What do clients expect of community care and what are their needs? The Community care for the Elderly: Needs and Service Use Study (CENSUS).

OBJECTIVE: To investigate the relationship between objectively assessed care needs and expectations for care of older people and their carers, before commencement of community care services. METHOD: Cross-sectional research on 55 community-dwelling older adults and carers, recruited after receiving approval for government-subsidised community care services. Care needs and expectations of care were assessed at interview. RESULTS: Participants' and carers' expectations for their pending community care package did not correspond with unmet participant needs. Instead, expectations corresponded with met needs, that is those for which they already received help, with the exception of expectations of domestic support and personal care. Participants' unmet needs were predominantly in social and recreational activities, eating, and physical and mental health. CONCLUSIONS: As community care in Australia becomes consumer-directed by 2015, care services will need to empower clients and carers through education about their needs and available services, as part of the assessment and service negotiation process.