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      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

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      , BA, MPH 1 , , MOT (Hons), PhD 1 , 2 , , RN, BA (Hons), MPH, GradcertCaHaemN 1 , , MBBS (Hons), MSc, PhD, FAFRM (RACP) 1 , 2 ,
      Health & Social Care in the Community
      John Wiley and Sons Inc.
      cottage respite, dementia, family carer, long‐term care, respite

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          Abstract

          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.

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          Most cited references42

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          Correlates of Physical Health of Informal Caregivers: A Meta-Analysis

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            Why caregivers of people with dementia and memory loss don't use services.

            To develop a typography of the characteristics of caregivers of community dwelling people with dementia or memory loss who do not use services and empirically investigate the reasons for service non-use. The findings of a literature review were used to develop a typography of caregivers' non-use of services. This typography was applied to a sample of community-based caregivers. One in three caregivers were using no services and one in four only one service. Despite considerable proportions reporting low levels of life satisfaction and high levels of overload and resentment the main reasons caregivers gave for not using services were that they did not consider they needed the services. Other reasons for service non-use included care recipient reluctance to use services, lack of knowledge of services or being in the process of applying for services. Service availability or affordability were not identified as major impediments to service use. Presence of a physical disability and contact with a social worker were associated with service use. Caregivers of people with dementia incur significant strain and have substantial need for a variety of services. Nevertheless many caregivers were not using support services, mainly because of perceived lack of need or lack of awareness. Better public promotion of services, destigmatising dementia and encouraging referrals from health professionals could help overcome the barriers to service use. Copyright (c) 2005 John Wiley & Sons, Ltd
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              Survival times in people with dementia: analysis from population based cohort study with 14 year follow-up.

              To provide estimates of survival after onset of dementia by age, sex, self reported health, disability, and severity of cognitive impairment. Analysis of participants from prospective population based cohort study in 1991-2003, with follow-up of dementia status in all individuals after two and six years (in one centre) and 10 years and in subsamples additionally at six and eight years and mortality until 2005. Multicentre population based study in England and Wales: two rural and three urban centres. 438 participants who developed dementia from a population based study of 13 004 individuals aged 65 years and over drawn from primary care population registers. Sociodemographic factors, cognitive function, specific health conditions, and self reported health collected at each interview. Cox's proportional hazards regression models were used to identify predictors of mortality from the selected variables in people who received diagnosis of dementia according the study's criteria. By December 2005, 356 of the 438 (81%) participants who developed dementia during the study had died. Estimated median survival time from onset of dementia to death was 4.1 years (interquartile range 2.5-7.6) for men and 4.6 years (2.9-7.0) for women. There was a difference of nearly seven years in survival between the younger old and the oldest people with dementia: 10.7 (25th centile 5.6) for ages 65-69; 5.4 (interquartile range 3.4-8.3) for ages 70-79; 4.3 (2.8-7.0) for ages 80-89, and 3.8 (2.3-5.2) years for ages > or =90. Significant factors that predicted mortality in the presence of dementia during the follow-up included sex, age of onset, and disability. These analyses give a population based estimated median survival for incident dementia of 4.5 years. Such estimates can be used for prognosis and planning for patients, carers, service providers, and policy makers.
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                Author and article information

                Contributors
                cpoulos@hammond.com.au
                Journal
                Health Soc Care Community
                Health Soc Care Community
                10.1111/(ISSN)1365-2524
                HSC
                Health & Social Care in the Community
                John Wiley and Sons Inc. (Hoboken )
                0966-0410
                1365-2524
                20 December 2019
                May 2020
                : 28
                : 3 ( doiID: 10.1111/hsc.v28.3 )
                : 850-861
                Affiliations
                [ 1 ] Centre for Positive Ageing HammondCare Sydney NSW Australia
                [ 2 ] School of Public Health and Community Medicine University of New South Wales Sydney NSW Australia
                Author notes
                [*] [* ] Correspondence

                Christopher J. Poulos, MBBS (Hons), MSc, PhD, FAFRM (RACP), Head of Research and Aged Care Clinical Services, HammondCare, Conjoint Professor, UNSW (School of Public Health and Community Medicine), Centre for positive Ageing, 4 Spicer Ave., Hammondville, NSW 2170, Australia.

                Email: cpoulos@ 123456hammond.com.au

                Author information
                https://orcid.org/0000-0002-2815-7275
                https://orcid.org/0000-0002-3541-708X
                Article
                HSC12916
                10.1111/hsc.12916
                7187172
                31863540
                4bcb8aeb-738e-457e-92ed-f574c0ad4541
                © 2019 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd

                This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

                History
                : 26 June 2019
                : 29 August 2019
                : 25 November 2019
                Page count
                Figures: 0, Tables: 4, Pages: 12, Words: 9125
                Funding
                Funded by: HammondCare
                Categories
                Original Article
                Original Articles
                Custom metadata
                2.0
                May 2020
                Converter:WILEY_ML3GV2_TO_JATSPMC version:5.8.1 mode:remove_FC converted:28.04.2020

                Health & Social care
                cottage respite,dementia,family carer,long‐term care,respite
                Health & Social care
                cottage respite, dementia, family carer, long‐term care, respite

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