Cost modelling rehabilitation in the home for reconditioning in the Australian context.

BACKGROUND: Inpatient rehabilitation services are challenged by increasing demand. Where appropriate, a shift in service models towards more community-oriented approaches may improve efficiency. We aimed to estimate the hypothetical cost of delivering a consensus-based rehabilitation in the home (RITH) model as hospital substitution for patients requiring reconditioning following medical illness, surgery or treatment for cancer, compared to the cost of inpatient rehabilitation. METHODS: Data were drawn from the following sources: the results of a Delphi survey with health professionals working in the field of rehabilitation in Australia; publicly available data and reports; and the expert opinion of the project team. Delphi survey data were analysed descriptively. The costing model was developed using assumptions based on the sources described above and was restricted to the Australian National Subacute and Non-Acute Patient Classification (AN-SNAP) classes 4AR1 to 4AR4, which comprise around 73% of all reconditioning episodes in Australia. RITH cost modelling estimates were compared to the known cost of inpatient rehabilitation. Where weighted averages are provided, these were determined based on the modelled number of inpatient reconditioning episodes per annum that might be substitutable by RITH. RESULTS: The cost modelling estimated the weighted average cost of a RITH reconditioning episode (which mirrors an inpatient reconditioning episode in intensity and duration) for AN-SNAP classes 4AR1 to 4AR4, to be A$11,371, which is 28.1% less than the equivalent weighted average public inpatient cost (of A$15,820). This represents hypothetical savings of A$4,449 per RITH reconditioning substituted episode of care. CONCLUSIONS: The hypothetical cost of a model of RITH which would provide patients with as comprehensive a rehabilitation service as received in inpatient rehabilitation, has been determined. Findings suggest potential cost savings to the public hospital sector. Future research should focus on trials which compare actual clinical and cost outcomes of RITH for patients in the reconditioning impairment category, to inpatient rehabilitation.

Steps to implementation: Understanding barriers and enablers for implementing Arts on Prescription at Home for people impacted by dementia.

ISSUE ADDRESSED: Arts on Prescription at Home (AoP@Home) involves a professional artist visiting a person with dementia and their informal carer(s) in their own home to engage them in participatory art making. While there is evidence for the use of these programs, more work is needed to facilitate effective implementation. This study explored contextual barriers and enablers to implementation of AoP@Home within a real-world community aged care service. METHODS: Two remote focus groups were conducted at a community aged care provider in Sydney, Australia. Key stakeholders (n = 14) were recruited, representing: people with dementia, informal (family) carers, AoP artists, service referrers and community service managers. Focus group transcripts were analysed using qualitative content analysis and mapped onto the Consolidated Framework for Implementation Research (CFIR). Outcomes were reviewed against the Expert Recommendations for Implementing Change (ERIC) strategy compilation to inform development of a tailored implementation strategy. RESULTS: Four overarching themes described the range of barriers and enablers to AoP@Home implementation: (1) "I don't know enough about it" (awareness and engagement within the sector), (2) artists delivering programs, (3) awareness and engagement of people impacted by dementia, (4) practicalities of implementation. All five domains of the CFIR were represented across the four themes. The ERIC compilation provided a list of practical strategies for implementation of AoP@Home. CONCLUSIONS: The implementation of psychosocial interventions for people living with dementia within a community aged care service is complex and multifactorial. So what?: Organisations planning implementation should consider conducting their own pre-implementation analysis to identify context-specific strategies.

A mixed method study exploring gender differences in dementia caregiving.

Few studies have investigated the experience of male carers of people with dementia and fewer specifically examined whether male and female carers of people with dementia differ in their approach to the caring role. As such, this research set-out to investigate whether male carers of people with dementia approach the caring role differently to female carers. Data from 167 survey participants (24 males and 143 females) were analysed using a mixed research methodology. Participants' demographics and scores on standardised burden and coping scales were analysed using linear regression. Participants' written responses to open-ended questions were analysed using thematic analysis anchored in theories of hegemonic masculinity. No significant gender differences were identified in carers' coping strategies or self-reported carer burden. However, qualitative analysis revealed strong thematic gender differences like: gendered barriers to help-seeking; gendered service preference; gendered considerations about residential care; gendered expression of burden; and themes of the absent son and exhausted daughter. This research identified that male carers of people with dementia approach help-seeking differently to female carers, typically focusing on addressing functional tasks and refraining from showing emotions, this despite reporting similar carer burden. Rapport building with male carers should start with conversations around functional issues rather than assessing the emotional impact of the caring role. The findings reinforce the need for more qualitative research into the unmet needs of male carers of people with dementia, to inform the design of male-friendly interventions which could facilitate timely access to services by male carers.

An Australian aged care home for people subject to homelessness: health, wellbeing and cost-benefit.

BACKGROUND: Older people subject to homelessness face many challenges including poor health status, geriatric syndromes, and depression, coupled with barriers in accessing health and aged care services. Many are in need of formal aged care at a younger age than the general population, yet, in Australia, specialised aged-care services to support this vulnerable cohort are limited. METHODS: This study was an evaluation of a new purpose-built aged care home for people with high care needs and who are homeless or at risk of homelessness. Over the first 12 months post-admission, the study examined: (1) changes in residents' physical, mental, psychological and social health, and (2) the costs incurred by the study cohort, including any cost benefit derived. RESULTS: Thirty-five residents enrolled in the study between March 2020 - April 2021. At admission, almost half of residents were within the range for dementia, the majority were frail, at high risk for falls, and had scores indicative of depression. Over time, linear mixed-effect models showed significant improvement in personal wellbeing scores, with clinically significant improvements in overall health related quality of life. Levels of physical functional independence, frailty, and global cognition were stable, but cognitive functional ability declined over time. Comparison of 12 month pre- and post- admission cost utility data for a smaller cohort (n = 13) for whom complete data were available, suggested an average per resident saving of approximately AU$32,000, while the QALY indicators remained stable post-admission. CONCLUSION: While this was a small study with no control group, these preliminary positive outcomes add to the growing body of evidence that supports the need for dedicated services to support older people subject to homelessness.

The Acceptability and Usefulness of Positive Behaviour Support Education for Family Carers of People With Frontotemporal Dementia: A Pilot Study.

AIM: This pilot study investigated the acceptability and usefulness of 4 weekly Positive Behaviour Support (PBS) education sessions (delivered face-to-face and online) for family carers of individuals diagnosed with behavioural-variant frontotemporal dementia (bvFTD). These sessions were adapted from the Family-directed Approach to Brain injury (FAB)-PBS program to the FTD population. METHODS: A pre-test post-test mixed-methods design was utilized. Primary outcome measures included a Carer Confidence questionnaire and post-intervention Feedback Questionnaire. Assessments were conducted prior to the 4-week education program, immediately following the final session and a 3 months follow-up. RESULTS: Ten family carers completed the 4 PBS education sessions and indicated that the program was helpful in providing behaviour support. No significant changes in confidence ratings were found before and following the education sessions. A majority of participants, however, reported positive changes to their approach in providing behaviour support, with key themes including 'recognising the function of behaviour', 'changing their own behaviour' and 'promoting a calmer approach'. CONCLUSIONS: The FAB-PBS education sessions demonstrate to be an acceptable approach to increasing the capability of family carers in providing behaviour support to individuals with FTD, which will need to be confirmed in a larger feasibility study.

A Systematic Review of Quality Dementia Clinical Guidelines for the Development of WHO's Package of Interventions for Rehabilitation.

BACKGROUND AND OBJECTIVES: As part of the WHO Rehabilitation 2030 call for action, the WHO Rehabilitation Programme is developing its Package of Interventions for Rehabilitation (PIR) to support ministries of health around the globe in integrating rehabilitation services into health systems. As a vital step for this PIR development, we conducted a systematic review of clinical practice guidelines (CPGs) for dementia to identify interventions for rehabilitation and related evidence. RESEARCH DESIGN AND METHODS: Following WHO Rehabilitation Programme and Cochrane Rehabilitation's methodology, quality CPGs published in English between January 2010 and March 2020 were identified using PubMed, Embase, CINAHL, PEDro, Google Scholar, guideline databases, and professional society websites. Guideline quality was assessed using the Appraisal of Guidelines for Research and Evaluation (II). RESULTS: Of the 22 CPGs that met the selection criteria, 6 satisfied the quality evaluation. Three hundred and thirty rehabilitation-related recommendations were identified, mostly concentrated in the areas of cognition, emotion, and carer support. There were many strong interventions, with moderate- to high-quality evidence that could be easily introduced in routine practice. However, major limitations were found both in the quality of evidence and scope, especially in areas such as education and vocation, community and social life, and lifestyle modifications. DISCUSSION AND IMPLICATIONS: Further rigorous research is needed to build quality evidence in dementia rehabilitation in general, and especially in neglected areas for rehabilitation. Future work should also focus on the development of CPGs for dementia rehabilitation. A multipronged approach is needed to achieve Universal Health Coverage for dementia rehabilitation.

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.

Supporting behaviour change in younger-onset dementia: mapping the needs of family carers in the community.

OBJECTIVES: Almost 10% of people with dementia experience a younger-onset of disease (before 65 years). Changes in behaviour are common, as are delays in diagnosis and limited access to appropriate support and services. This study aimed to explore the specific behaviour support needs of families living with younger-onset dementia. METHODS: Seventy-one families of people with younger-onset dementia were surveyed to understand the experience of family carers regarding difficult-to-manage behaviour changes, confidence in identifying and implementing behaviour support strategies, use of specific behaviour support strategies, and use of formal and informal support services regarding behaviour changes. RESULTS: Survey responses were received from family members of people living with behavioural variant frontotemporal dementia (n = 28), semantic dementia (n = 17), and Alzheimer's disease (n = 23). Over 90% of family carers reported difficult-to-manage behaviours which fell into four main domains: (1) aggression, (2) compulsive behaviour, (3) disinhibition and inappropriate social behaviour, and (4) apathy. A range of preventative and responsive strategies, with an emphasis on de-escalation strategies were identified and carers reported variable confidence in managing behaviour changes or in accessing formal support strategies. CONCLUSIONS: Difficult-to-manage behaviour changes in community-dwelling people with younger-onset dementia are common. The existing agency of families should be recognised and built upon with better access to specific behaviour support services to increase competence and confidence in providing behaviour support and ultimately improve quality of life for them and their family member with dementia.

Development of an assessment guide to evaluate meaningful outcomes for people living with dementia who are engaged in reablement programs.

PURPOSE: Clinical practice guidelines for dementia recommend the provision of rehabilitative or reablement interventions that support functioning. This project sought to develop an assessment guide, centring on goal attainment scaling (GAS), for practitioners to measure attainment of meaningful outcomes for people living with dementia participating in reablement programs. MATERIALS AND METHODS: To assist in guide development, two focus groups (people impacted by dementia [n = 10]) explored priority reablement goals. Two further focus groups (allied health practitioners [n = 11]) explored understanding and experience using GAS, opinions on what goals would be realistic, and how an assessment guide could best support practice. RESULTS: The key focus group themes that emerged and which underpinned guide development were: 'what is possible'; 'who sets the goals'; 'practitioner perspectives on using GAS'. Leisure was a key goal priority for people impacted by dementia, and echoed by practitioners. The assessment guide is structured around three steps: choosing goals (using focus group derived Reablement Goal Lists); defining goals (using a new Dementia-specific SMART Framework); scoring goals (using GAS-Light). CONCLUSIONS: Providing a structured approach to evaluation of reablement programs for people living with dementia could lead to more consistent service provision, improved outcomes and opportunities for benchmarking.Implications for RehabilitationDementia is a leading cause of disability in older people.Rehabilitative interventions such as reablement are recommended to support functioning in people living with dementia, but there is currently no consistent method of selecting and evaluating attainment of meaningful outcomes.This study describes the reablement goals identified by people impacted by dementia as being most important, along with allied health practitioner views on goal-setting and the use of Goal Attainment Scaling (GAS).Study findings were used to develop a structured assessment guide employing three steps: choosing reablement goals; defining those goals using a new dementia-specific SMART Framework; and scoring goals using GAS-Light.A consistent approach to goal selection and evaluation of attainment for people impacted by dementia participating in reablement programs may lead to more effective rehabilitative interventions in this group.

Advocating the rights of people with dementia to contribute to research: Considerations for researchers and ethics committees.

OBJECTIVE: Research involving people with dementia is vital to appropriately inform policy and practice decisions affecting this population. As dementia-care researchers, we frequently advocate to Human Research Ethics Committees for the right of people with dementia to choose whether to participate in research. This brief report provides some considerations for researchers and ethics committees. METHOD: Descriptive summary of principles that argue for inclusion of people with dementia in research studies. RESULTS: Specifically excluding people living with dementia from research because of perceived cognitive impairment is inappropriate in light of human rights principles and the right to contribute to evidence-based care. CONCLUSIONS: There is a difference between capacity to provide informed consent and ability to provide perspectives that are valid for each individual. Providing the opportunity for a person with dementia to participate in research and offering support to do this is a matter of human rights.

Positive behaviour support in frontotemporal dementia: A pilot study.

Frontotemporal dementia (FTD) is a progressive neurodegenerative brain condition clinically characterized by marked changes in behaviour that impact the individuals' relationships and community participation, and present challenges for families. Family carers of individuals with FTD find apathy and disinhibition particularly challenging leading to high levels of stress and burden. Positive behaviour support (PBS) as a behaviour intervention framework has never been trialled in FTD. This pilot study examined the functional basis of apathetic and disinhibited behaviours in four FTD dyads and explored the acceptability of a PBS intervention. The PBS programme was provided by an occupational therapist in the participants' homes. Measures collected at baseline and post-intervention (M = 3.9 months) assessed: function of behaviours, challenging behaviours, and qualitative outcomes pertaining to the acceptability of the PBS approach. PBS was an acceptable intervention for all four dyads. "Sensory" and "tangible" were the most common functions contributing to the maintenance of behaviour changes, and aspects of apathetic and disinhibited behaviours improved following intervention. This study demonstrates the acceptability and potential benefit of a PBS programme to provide support in FTD. A more rigorous trial will be an important next step in developing improved services tailored to the needs of this unique population.

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.

Perspectives of Australian family carers of people with dementia on the 'cottage' model of respite: Compared to traditional models of residential respite provided in aged care facilities.

The majority of people living with dementia reside in the community and are often reliant on the support of informal carers to do so. Family carers face many challenges in supporting the person with dementia to remain at home, and short-term respite care is a valued service that offers a temporary break from the role. Respite cottages provide short-term care in a residential home-like setting with a limited number of clients and is a more flexible approach to accessing the service. Disproportionate use of cottage respite in Australia suggests this model is preferred over traditional respite within residential aged care facility (RACF) settings, yet limited research exists to compare these models. This study sought to understand the perceptions of carers who had used cottage respite in comparison to other models, and explore the contribution of cottage respite for supporting carers to continue in their role and maintain their care recipient (CR) living at home. Semi-structured interviews were conducted with 126 family carers who had used one of two New South Wales-based respite cottages within a 2-year period; 67 of whom had also used RACF respite. Thematic analysis revealed four main themes around the benefits of cottage respite: (a) an effective essential service, (b) flexibility, (c) familiarity and (d) appropriateness, especially for early stage or younger onset dementia. Carers indicated that the more homely, familiar and intimate cottage model of respite care was preferential to that of the larger, institutional-style RACF respite setting. Carers credited the cottage model of respite service with delaying their need for permanent residential placement by over 12 months. The cottage respite model provides an important avenue to supporting the individual needs of dementia dyads, with potential to delay permanent placement, and should be offered more broadly to provide people with more choice about their care.

The tailored activity program (TAP) to address behavioral disturbances in frontotemporal dementia: a feasibility and pilot study.

PURPOSE: To explore the feasibility of implementing the Tailored Activity Program with a cohort of people with frontotemporal dementia and their carers (dyads). METHODS: The Tailored Activity Program is an occupational therapy based intervention that involves working collaboratively with family carers and prescribes personalized activities for behavioral management in people with dementia. Twenty dyads randomized into the study (Tailored Activity Program: n = 9; Control: n = 11) were assessed at baseline and 4-months. Qualitative analyzes evaluated feasibility and acceptability of the program for the frontotemporal dementia cohort, and quantitative analyzes (linear mixed model analyzes, Spearman's rho correlations) measured the impact of the program on the dyads. RESULTS: The Tailored Activity Program was an acceptable intervention for the frontotemporal dementia dyads. Qualitative analyses identified five themes: "carer perceived benefits", "carer readiness to change", "strategies used by carer to engage person with dementia", "barriers to the Tailored Activity Program uptake/implementation", and "person with dementia engagement". Quantitative outcomes showed an overall reduction of behavioral symptoms (F18.34 = 8.073, p = 0.011) and maintenance of functional performance in the person with dementia (F18.03 = 0.375, p = 0.548). CONCLUSIONS: This study demonstrates the potential for using an activity-based intervention such as the Tailored Activity Program in frontotemporal dementia. Service providers should recognize that while people with frontotemporal dementia present with challenging issues, tailored therapies may support their function and reduce their behavioral symptoms. Implications for rehabilitation The Tailored Activity Program is an occupational therapy based intervention that involves prescribing personalized activities for behavioral management in dementia. The Tailored Activity Program is an acceptable and feasible intervention approach to address some of the unique behavioral and functional impairments inherent in frontotemporal dementia.

Apathy and functional disability in behavioral variant frontotemporal dementia.

Background: Behavioral variant frontotemporal dementia (bvFTD) has profound consequences on patients and their families. In this multicenter study, we investigated the contribution of cognitive and neuropsychiatric factors to everyday function at different levels of overall functional impairment. Methods: In a retrospective cross-sectional study, 109 patients with bvFTD from 4 specialist frontotemporal dementia centers (Australia, England, India, and Brazil) were included. The measures administered evaluated everyday function (Disability Assessment for Dementia [DAD]), dementia staging (Clinical Dementia Rating [CDR]), general cognition (Addenbrooke's Cognitive Examination-revised [ACE-R]), and neuropsychiatric symptoms (Neuropsychiatric Inventory [NPI]). Patients were then subdivided according to functional impairment on the DAD into mild, moderate, severe, and very severe subgroups. Three separate multiple linear regression analyses were run, where (1) total DAD, (2) basic activities of daily living (BADL), and (3) instrumental activities of daily living (IADL) scores were dependent variables; ACE-R total score and selected NPI domains (agitation/aggression, euphoria, apathy, disinhibition, irritability, aberrant motor behavior) were used as independent variables. Age, sex, education, and country of origin were controlled for in the analyses. Results: Cognitive deficits were similar across the mild, moderate, and severe subgroups but significantly worse in the very severe subgroup. NPI domain scores (agitation/aggression, euphoria, apathy, disinhibition, irritability, aberrant motor behavior) did not differ across the DAD subgroups. In the multiple regression analyses, a model including ACE-R and NPI apathy explained 32.5% of the variance for total DAD scores. For IADL, 35.6% of the variance was explained by the ACE-R only. No model emerged for BADL scores. Conclusions: Cognitive deficits and apathy are key contributors to functional disability in bvFTD but factors underlying impairment in BADLs remain unclear. Treatments targeting reduction of disability need to address apathy and cognitive impairment to ensure greater efficacy, especially in regards to IADLs.

Behavioral-variant frontotemporal dementia: Distinct phenotypes with unique functional profiles.

OBJECTIVE: To identify distinct behavioral phenotypes of behavioral-variant frontotemporal dementia (bvFTD) and to elucidate differences in functional, neuroimaging, and progression to residential care placement. METHODS: Eighty-eight patients with bvFTD were included in a cluster analysis applying levels of disinhibition and apathy (Cambridge Behavioural Inventory-Revised) to identify phenotypic subgroups. Between-group (Kruskal-Wallis, Mann-Whitney U) functional differences (Disability Assessment for Dementia) and time to residential care placement (survival analyses) were examined. Cortical thickness differences (whole-brain MRI) were analyzed in patients with bvFTD vs healthy controls (n = 30) and between phenotypic subgroups. RESULTS: Four phenotypic subgroups were identified: primary severe apathy (n = 26), severe apathy and disinhibition (n = 26), mild apathy and disinhibition (n = 27), and primary severe disinhibition (n = 9). Patients with severely apathetic phenotypes were more functionally impaired and had more extensive brain atrophy than those with mild apathy or severe disinhibition alone. Further imaging analyses indicated that the right middle temporal region is critical for the development of disinhibition, an association that remains with disease progression and in the context of severe apathy. Finally, no difference in time to residential care admission was found between phenotypes. CONCLUSIONS: This study reveals that different clinical behavioral phenotypes of bvFTD have differing profiles of functional decline and distinct patterns of associated cortical changes. These findings emphasize the importance of apathy in functional impairment, highlight the role of the right temporal region in disinhibition, and suggest that disability may be a sensitive outcome measure for treatments targeting reduction of apathy. These phenotypes could also support understanding of prognosis and clinical management.

Factors Underpinning Caregiver Burden in Frontotemporal Dementia Differ in Spouses and their Children.

The objectives of this observational study were to (1) compare spousal and child caregiver burden; (2) compare co-resident and live-out child caregiver burden; and (3) investigate factors influencing spousal and child caregiver burden. Data was collected from 90 caregivers of people with frontotemporal degeneration (FTD) recruited from the Frontotemporal Dementia Research Group (Frontier) at Neuroscience Research, Australia. Of this caregiver group, 43 were spousal caregivers and 47 were child caregivers. Caregiver burden and emotional state were evaluated using the short Zarit Burden Interview and the short version of the Depression, Anxiety and Stress Scale-21. The Social Network Index was applied to ascertain the social network of the caregiver, while the Intimate Bond Measure was used to evaluate the current quality of the relationship between the caregiver and the person with dementia. The Frontotemporal Dementia Rating Scale was used to assess severity of dementia. Spousal and child caregivers experienced similar levels of burden, depression, anxiety, and stress, regardless of disease severity. Co-resident child caregivers had smaller social networks and greater burden than live-out caregivers. Dementia severity was key in spousal caregiver burden, whereas caregiver depression was most important in child caregiver burden. Child and spousal caregivers of individuals with FTD share similar levels of burden, influenced by different factors. Future interventions need to account for these differences.

Longitudinal change in everyday function and behavioral symptoms in frontotemporal dementia.

BACKGROUND: The relationship between behavioral changes and functional decline in frontotemporal dementia (FTD) is not well understood. METHODS: Thirty-nine patients (21 behavioral variant FTD [bvFTD], 18 semantic variant primary progressive aphasia [svPPA]) were followed up longitudinally (2-4 years follow-up). Functional (Disability Assessment for Dementia) and behavioral (Cambridge Behavioural Inventory Revised) assessments were included for between-group (pairwise comparisons, mixed model analysis) and within-group analyses (bivariate correlations). RESULTS: Functionally, patients with bvFTD were more impaired than patients with svPPA at baseline and continued to be at follow-up, despite similar disease duration. By contrast, behavioral impairments differed between patient groups at baseline and at follow-up. At baseline, patients with bvFTD exhibited higher levels of apathy and changes in eating than patients with svPPA; disinhibited and stereotypical behaviors were similar. Over the years, patients with bvFTD showed reduction in disinhibition and stereotypical behavior while apathy and eating changes increased. By contrast, all measured behaviors increased in patients with svPPA over time. Finally, only apathy made longitudinal contributions to functional disability in patients with svPPA, whereas apathy and stereotypical behavior were associated with increased disability in patients with bvFTD. CONCLUSIONS: Despite shared overlapping baseline behavioral symptoms, patients with bvFTD are more functionally impaired than patients with svPPA. Apathy has a strong role in disability for both bvFTD and svPPA, but stereotypical behaviors only contributed to functional deficits in patients with bvFTD. Our findings suggest that rigid/compulsive behaviors may in fact support activity engagement in patients with svPPA. Taken together, our results indicate that interventions to reduce disability in the FTD spectrum require an alternative rationale in comparison to Alzheimer disease dementia, and should carefully weigh the interaction of behavioral symptoms and functional status.