The impact of dementia on aged care service transitions in the last five years of life

2020 ◽  
Author(s):  
Heidi J Welberry ◽  
Louisa R Jorm ◽  
Sebastiano Barbieri ◽  
Benjumin Hsu ◽  
Henry Brodaty
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Residential Care ◽  
Service Use ◽  
Care Service ◽  
Care Home ◽  
Aged Care ◽  
Dementia Diagnosis ◽  
People With Dementia ◽  
The Impact

Abstract Objective To investigate the impact of dementia on aged care service use at end-of-life. Methods Our retrospective data linkage study in New South Wales, Australia, used survey data from participants in the 45 and Up Study who died between July 2011–June 2014 linked to routinely collected administrative data for 2006–2014. We investigated movement between aged care “states” (No Services, Home Care including Home Support and Low-and High-Level Home Care and Residential Care) in the last five years of life. The dementia cohort comprised decedents with a dementia diagnosis recorded in hospital records, death certificates or who had claims for dementia-specific medicines prior to death (n = 2,230). The comparison cohort were decedents with no dementia diagnosis, matched 1:1 on age-at-death, sex, income and location. Results Compared to those without dementia, people with dementia were more likely to: use home care (67 versus 60%, P < 0.001), enter residential care (72 versus 30%, P < 0.001) and stay longer in residential care (median 17.9 versus 12.7 months, P < 0.001). Five years before death, more people with dementia were within residential care (6 versus 4%; RR = 1.61, 95%CI = 1.23–2.10) and these rates diverged at the end-of-life (69 versus 28%, RR = 2.48, 95%CI = 2.30–2.66). Use of home-based care was higher among people with dementia five years from death (20 versus 17%; RR = 1.15, 95%CI = 1.02–1.30) but lower at end-of-life (13 versus 24%, RR = 0.55, 95%CI = 0.49–0.63). Conclusion Dementia-specific aged care trajectories were dominated by residential care. Home care use declined towards end-of-life for people with dementia and may not be meeting their needs.

scholarly journals Cohort profile: Dementia in the Registry of Senior Australians

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e039907
Author(s):  
Monica Cations ◽  
Catherine E Lang ◽  
Stephanie A Ward ◽  
Maria Crotty ◽  
Craig Whitehead ◽  
...  
Keyword(s):  
Service Use ◽  
Care Service ◽  
Aged Care ◽  
Residential Aged Care ◽  
Assessment Data ◽  
Cross Sectional ◽  
People With Dementia ◽  
Psychotropic Medicine ◽  
Care Assessment ◽  
The Impact

PurposeClinical quality registries (CQRs) are being established in many countries to monitor, benchmark, and report on the quality of dementia care over time. Case ascertainment can be challenging given that diagnosis occurs in a variety of settings. The Registry of Senior Australians (ROSA) includes a large cohort of people with dementia from all Australian states and territories identified using routinely collected aged care assessment data. In ROSA, assessment data are linked to information about aged and health service use, medicine dispensing, hospitalisations and the National Death Index. The ROSA dementia cohort was established to capture people for the Australian dementia CQR currently in development who may not be identified elsewhere.ParticipantsThere were 373 695 people with dementia identified in aged care assessments from 2008 to 2016. Cross-sectional analysis from the time of cohort entry (e.g. when first identified with dementia on an aged care assessment) indicates that individuals were 84.1 years old on average, and 63.1% were female. More than 44% were first identified at entry to permanent residential aged care. The cohort recorded more severe cognitive impairment at entry than other international dementia registries.Findings to dateThe cohort has so far been used to demonstrate a declining prevalence of dementia in individuals entering the aged care sector, examine trends in psychotropic medicine prescribing, and to examine the impact of dementia on aged care service use and outcomes.Future plansThe ROSA dementia cohort will be updated periodically and is a powerful resource both on its own and as a contributor to the Australian dementia CQR. Integration of the ROSA dementia cohort with the dementia CQR will ensure that people with dementia using aged care services can benefit from the ongoing monitoring and benchmarking of care that a registry can provide.

scholarly journals The Impact of Musculoskeletal Conditions on Assessed Levels of Care Required by Older Australians

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Tiffany K Gill ◽  
Steve Wesselingh ◽  
Maria C Inacio
Keyword(s):  
Risk Factors ◽  
Residential Care ◽  
Chronic Conditions ◽  
Community Care ◽  
Care Service ◽  
Functional Limitations ◽  
Aged Care ◽  
Residential Aged Care ◽  
Musculoskeletal Conditions ◽  
The Impact

IntroductionMusculoskeletal problems, including conditions such as back pain, neck pain, rheumatoid arthritis, gout and osteoarthritis are common in the population and significant contributors to global disease burden. Age is one of the most common risk factors for musculoskeletal conditions and over 40% of older people accessing residential aged care have a musculoskeletal condition. It is not known whether individuals living in the community with musculoskeletal conditions have similar needs to those in permanent care and this is important to know in order to provide appropriate care. Objectives and ApproachThe objective of this study was to profile individuals with musculoskeletal conditions in different aged care service settings (i.e. permanent care, community care only, transition/ respite care, or no services). Specifically, we examined the concurrent chronic conditions, health risk factors and functional limitations of individuals by service setting. A cross-sectional evaluation of individuals in the National Historical Cohort of the Registry of Senior Australians (ROSA) between 2004 and 2014 was conducted. Multivariable logistic regression models estimated the factors associated with being in different aged care settings. Odds ratios (OR) and 95% confidence intervals (CI) were determined. Results401,026 (42.5%) individuals with musculoskeletal conditions were assessed for aged care service eligibility during the study period. Of these 197,181 (49.2%) accessed permanent care, 37,003 (9.2%) accessed home care, 54,826 (13.7%) transition/respite, and 112,016 (27.9%) - no care. Individuals accessing community care compared to residential care were more likely to be female, have pain and have difficulty maintaining their home, as were individuals accessing no services compared to residential care. Conclusion / ImplicationsCompared to those in residential care, individuals with musculoskeletal conditions in the community with or without assistance had few differences related to other chronic conditions and functional limitations. But the reasons why some had support, while others did not, are unclear.

“There isn't an easy way of finding the help that's available.” Barriers and facilitators of service use among dementia family caregivers: a qualitative study

2017 ◽  
Vol 29 (5) ◽  
pp. 765-776 ◽  
Author(s):  
Ashley Macleod ◽  
Gemma Tatangelo ◽  
Marita McCabe ◽  
Emily You
Keyword(s):  
Family Caregivers ◽  
Service Use ◽  
Care Service ◽  
Aged Care ◽  
Community Dwelling ◽  
Barriers And Facilitators ◽  
Care Recipient ◽  
Structured Interviews ◽  
Good Communication ◽  
People With Dementia

ABSTRACTBackground:Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia.Method:Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis.Results:Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers’ beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an “expert” point of contact, and having beliefs about the caregiving role that enabled the use of services.Conclusion:Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.

scholarly journals Routine health monitoring and preventative care for people with dementia in UK primary care

2019 ◽  
Vol 69 (suppl 1) ◽  
pp. bjgp19X703097
Author(s):  
Cini Bhanu ◽  
Mary Elizabeth Jones ◽  
Kate Walters ◽  
Irene Petersen ◽  
Claudia Cooper
Keyword(s):  
Primary Care ◽  
Service Use ◽  
Minority Groups ◽  
Care Service ◽  
Care Plan ◽  
Health Improvement ◽  
Preventative Care ◽  
Dementia Diagnosis ◽  
People With Dementia ◽  
Significant Difference

BackgroundUK National Dementia Strategies prioritise fair access to dementia treatment for all. It has been shown that people from black and minority ethnic (BME) groups are diagnosed later and those are less likely to receive anti-dementia medication.AimIt is hypothesised that access to primary care services post diagnosis is also reduced in ethnic minority groups.MethodThe Health Improvement Network (THIN) database of UK primary care records was analysed between 2015 and 2016, all patients with dementia were identified, and health service use was compared. Annual GP consultations, blood pressure (BP), weight/body mass index (BMI), Quality and Outcomes Framework (QOF) dementia review, and flu vaccination recordings were compared between ethnic groups.ResultsOver 20 000 individuals with a dementia diagnosis aged 50–105 years were included. There was no significant difference between white, black, and Asian groups across all outcomes. Overall 80% received an annual BP check, 86% received at least one annual GP consultation, 68% received an annual dementia review, and 48% had a weight/BMI recorded. People with dementia who did not have cardiovascular risk factors were less likely to have their BP checked (59%) and be seen by a GP.ConclusionThere do not appear to be ethnic inequalities in primary care service use post-dementia diagnosis. The overall proportion receiving an annual dementia review and weight check was low, despite recommendations that a care plan should be reviewed annually (including nutrition as a key priority). Post-diagnosis support and preventative care should be prioritised in general practice for all people living with dementia.

Dementia families: Relinquishing home care to aged care services: Guilt, traumatic loss and growth

Dementia ◽  
2020 ◽  
pp. 147130122097078
Author(s):  
Bruce D Walmsley ◽  
Lynne McCormack
Keyword(s):  
Home Care ◽  
Family Member ◽  
Interpretative Phenomenological Analysis ◽  
Phenomenological Study ◽  
Care Home ◽  
Family Members ◽  
Well Being ◽  
Aged Care ◽  
Structured Interviews ◽  
The Impact

Background and Objectives Few studies explore both negative and positive perspectives of family members who relinquish home care of a family member with dementia for systemic aged care. Research Design and Methods This phenomenological study sought the ‘lived’ experience of relinquishing the role of home carer for a family member with mild to severe dementia to others within care home settings, by seeking to understand the impact of aged care on family members’ psychological well-being. Using semi-structured interviews, positive and negative subjective interpretations from 17 families (27 individuals) provided data for analysis, following the protocols of interpretative phenomenological analysis. Results One superordinate theme, mistrust/integrity, overarched oscillation between mistrust of the aged care system and a struggle for personal integrity in caring for these participants. Two sub-themes emerged: intrinsic trauma and extrinsic trauma. Intrinsic trauma explained feelings of helplessness and guilt, and internally directed responses that triggered a retreat into submission ultimately reducing the participant’s role in advocacy. Extrinsic trauma represented externally directed responses such as anger and frustration, where family members became more engaged and watchful and recognised a need for vigilance and advocacy. Paradoxically oscillating between these personal struggles, participants exhibited growth, a third theme that defined assertive/advocacy utilised to nurture hope, gratitude, courage and change. Discussion and Implications Family members experienced complex distress as they relinquished home care to others within systemic aged care for a member with dementia. By developing adaptive responses as appropriate, for example, advocating for their family member or accepting compliance with treatment, collaborative care between family and staff created better outcomes for the family member with dementia.

Accuracy of Caregiver Proxy Reports of Home Care Service Use

2016 ◽  
Vol 38 (3) ◽  
pp. 434-442
Author(s):  
Neena L. Chappell ◽  
Helena Kadlec
Keyword(s):  
Home Care ◽  
Service Use ◽  
Care Service ◽  
Care Home ◽  
Home Care Services ◽  
Respite Care ◽  
Care Recipient ◽  
Home Support ◽  
Care Services ◽  
Proxy Reports

Although much of the research on service use by older adults with dementia relies on proxy reports by informal caregivers, little research assesses the accuracy of these reports, and that which does exist, does not focus on home care services. This brief report compares proxy reports by family caregivers to those with dementia with provincial Ministry of Health records collected for payment and monitoring. The four home care services examined include home nursing care, adult day care, home support, and respite care. Data come from a province-wide study of caregivers in British Columbia, Canada. Caregiver reports are largely consistent with Ministry records, ranging from 81.0% agreement for home support to 96.6% for respite care. Spouses living with the care recipient (the vast majority of the sample) are the most accurate. Others, whether living with the care recipient or not, have only a 50-50 chance of being correct.

scholarly journals Person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kari-Anne Hoel ◽  
Anne Marie Mork Rokstad ◽  
Ingvild Hjorth Feiring ◽  
Bjørn Lichtwarck ◽  
Geir Selbæk ◽  
...  
Keyword(s):  
Decision Making ◽  
Home Care ◽  
Shared Decision Making ◽  
Care Service ◽  
Home Care Services ◽  
Shared Decision ◽  
Care Services ◽  
Person Centered Care ◽  
People With Dementia ◽  
Centered Care

Abstract Background Dementia is one of the main causes of disability and dependence in older people, and people with dementia need comprehensive healthcare services, preferably in their own homes. A well-organized home care service designed for people with dementia is necessary to meet their needs for health- and social care. Therefore, it is important to gain knowledge about how people with dementia experience the home care service and if the service responds to their wishes and needs. The aim of this study was to explore the experience of home care services among people with dementia, to understand the continuity in services, how the service was adapted to people with dementia, and how the patient experienced person-centered care and shared decision-making. Methods We used a qualitative, exploratory design based on a phenomenological-hermeneutic approach and performed individual in-depth interviews with persons with dementia. A convenience sample of 12 persons with moderate to severe degrees of dementia from four Norwegian municipalities participated in the study. The interviews were conducted in February 2019. Results The findings identified that the participants appreciated the possibility to stay safely in their own homes and mostly experienced good support from staff. They expressed various views and understanding of the service and experienced limited opportunities for user involvement and individualized, tailored service. The overall theme summarizing the findings was: “It is difficult for people with dementia to understand and influence home care services, but the services facilitate the possibility to stay at home and feel safe with support from staff.” Conclusion The participants did not fully understand the organization of the care and support they received from the home care services, but they adapted to the service without asking for changes based on their needs or desires. Although person-centered care is recommended both nationally and internationally, the participants experienced little inclusion in defining the service they received, and it was perceived as unclear how they could participate in shared decision-making.

Models of home care services for persons with dementia: a narrative review

2015 ◽  
Vol 27 (10) ◽  
pp. 1593-1600 ◽  
Author(s):  
Lee-Fay Low ◽  
Jennifer Fletcher
Keyword(s):  
Case Management ◽  
Home Care ◽  
Integrated Care ◽  
Community Dwelling ◽  
Narrative Review ◽  
Nursing Home Admission ◽  
Community Based ◽  
People With Dementia ◽  
The Impact ◽  
Community Based Services

ABSTRACTBackground:Worldwide trends of increasing dementia prevalence, have put economic and workforce pressures to shifting care for persons with dementia from residential care to home care.Methods:We reviewed the effects of the four dominant models of home care delivery on outcomes for community-dwelling persons with dementia. These models are: case management, integrated care, consumer directed care, and restorative care. This narrative review describes benefits and possible drawbacks for persons with dementia outcomes and elements that comprise successful programs.Results:Case management for persons with dementia may increase use of community-based services and delay nursing home admission. Integrated care is associated with greater client satisfaction, increased use of community based services, and reduced hospital days however the clinical impacts on persons with dementia and their carers are not known. Consumer directed care increases satisfaction with care and service usage, but had little effect on clinical outcomes. Restorative models of home care have been shown to improve function and quality of life however these trials have excluded persons with dementia, with the exception of a pilot study.Conclusions:There has been a little research into models of home care for people with dementia, and no head-to-head comparison of the different models. Research to inform evidence-based policy and service delivery for people with dementia needs to evaluate both the impact of different models on outcomes, and investigate how to best deliver these models to maximize outcomes.

Older people dying with dementia: a nationwide study

2012 ◽  
Vol 24 (10) ◽  
pp. 1581-1591 ◽  
Author(s):  
Koen Meeussen ◽  
Lieve Van den Block ◽  
Michael Echteld ◽  
Nicole Boffin ◽  
Johan Bilsen ◽  
...  
Keyword(s):  
Older People ◽  
End Of Life ◽  
Elderly People ◽  
Cognitive Abilities ◽  
End Of Life Care ◽  
Large Scale ◽  
Care Home ◽  
Life Care ◽  
Early Palliative Care ◽  
People With Dementia

ABSTRACTBackground: Large-scale nationwide data describing the end-of-life characteristics of older people with dementia are lacking. This paper describes the dying process and end-of-life care provided to elderly people with mild or severe dementia in Belgium. It compares with elderly people dying without dementia.Methods: A nationwide retrospective mortality study was conducted, via representative network of general practitioners (GPs) in 2008 in Belgium, with weekly registration of all deaths (aged ≥ 65) using a standardized form. GPs reported on diagnosis and severity of dementia, aspects of end-of-life care and communication, and on the last week of life in terms of symptoms that caused distress as judged by the GP, and the patients’ physical and cognitive abilities.Results: Thirty-one percent of our sample (1,108 deaths) had dementia (43% mildly, 57% severely). Of those, 26% died suddenly, 59% in care home, and 74% received palliative treatment, versus 37%, 19%, and 55% in people without dementia. GP–patient conversations were less frequent among those with (45%) than those without (73%) dementia, and 11% of both groups had a proxy decision-maker. During the last week of life, physical and psychological distress was common in both groups. Of older people with dementia, 83% were incapable of decision-making and 83% were bedridden; both significantly higher percentages than found in the group without dementia (24% and 52%).Conclusions: Several areas of end-of-life care provision could be improved. Early communication and exploration of wishes and appointment of proxy decision-makers are important components of an early palliative care approach which appears to be initiated too infrequently.

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