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Dying with dementia: the views of family caregivers about quality of life
To document the views of family caregivers of persons with dementia about quality of life for their relative during the late and terminal stages of the disease, as part of an exploratory study of best quality care and support. Fifteen former caregivers (five wives, five husbands, two sons, three dau...
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| Published in: | Australasian journal on ageing 2008-06, Vol.27 (2), p.89-92 |
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| Main Authors: | , , |
| Format: | Article |
| Language: | English |
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| container_end_page | 92 |
| container_issue | 2 |
| container_start_page | 89 |
| container_title | Australasian journal on ageing |
| container_volume | 27 |
| creator | Russell, Cherry Middleton, Heather Shanley, Chris |
| description | To document the views of family caregivers of persons with dementia about quality of life for their relative during the late and terminal stages of the disease, as part of an exploratory study of best quality care and support.
Fifteen former caregivers (five wives, five husbands, two sons, three daughters) participated in in-depth semistructured interviews.
Participants identified three main sets of indicators of quality of life: the physical body, the physical and social environment and treatment with respect and dignity. The constructs 'quality of life' and 'quality of care' tended to be conflated in the experience of caregivers. An important role for caregivers was to interpret and represent the subjective experience of the person with dementia.
Quality of life needs to be understood from multiple perspectives. Caregivers' views are a central part of this understanding and should be used to inform future research and service development. |
| doi_str_mv | 10.1111/j.1741-6612.2008.00282.x |
| format | article |
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Fifteen former caregivers (five wives, five husbands, two sons, three daughters) participated in in-depth semistructured interviews.
Participants identified three main sets of indicators of quality of life: the physical body, the physical and social environment and treatment with respect and dignity. The constructs 'quality of life' and 'quality of care' tended to be conflated in the experience of caregivers. An important role for caregivers was to interpret and represent the subjective experience of the person with dementia.
Quality of life needs to be understood from multiple perspectives. Caregivers' views are a central part of this understanding and should be used to inform future research and service development.</description><identifier>ISSN: 1440-6381</identifier><identifier>EISSN: 1741-6612</identifier><identifier>DOI: 10.1111/j.1741-6612.2008.00282.x</identifier><identifier>PMID: 18713199</identifier><language>eng</language><publisher>Australia</publisher><subject>Aged ; Aged, 80 and over ; Aging - physiology ; Alzheimer's Disease ; Attitude to Death ; Attitudes ; Caregivers - psychology ; Carers ; Death ; Dementia - diagnosis ; Dementia - mortality ; Dementia - therapy ; Diseases ; Family ; Family Relations ; Female ; Geriatric Assessment ; Home Nursing - methods ; Home Nursing - psychology ; Humans ; Interviews as Topic ; Late-stage dementia ; Long Term Care ; Male ; Mental illness ; Middle Aged ; New South Wales ; Quality of Life ; Respite Care - organization & administration ; Risk Assessment ; Sick Role ; Stress, Psychological ; Surveys and Questionnaires ; Terminal Care - methods ; Terminal Care - psychology ; Time Factors</subject><ispartof>Australasian journal on ageing, 2008-06, Vol.27 (2), p.89-92</ispartof><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,780,784,27924,27925,33775</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/18713199$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Russell, Cherry</creatorcontrib><creatorcontrib>Middleton, Heather</creatorcontrib><creatorcontrib>Shanley, Chris</creatorcontrib><title>Dying with dementia: the views of family caregivers about quality of life</title><title>Australasian journal on ageing</title><addtitle>Australas J Ageing</addtitle><description>To document the views of family caregivers of persons with dementia about quality of life for their relative during the late and terminal stages of the disease, as part of an exploratory study of best quality care and support.
Fifteen former caregivers (five wives, five husbands, two sons, three daughters) participated in in-depth semistructured interviews.
Participants identified three main sets of indicators of quality of life: the physical body, the physical and social environment and treatment with respect and dignity. The constructs 'quality of life' and 'quality of care' tended to be conflated in the experience of caregivers. An important role for caregivers was to interpret and represent the subjective experience of the person with dementia.
Quality of life needs to be understood from multiple perspectives. Caregivers' views are a central part of this understanding and should be used to inform future research and service development.</description><subject>Aged</subject><subject>Aged, 80 and over</subject><subject>Aging - physiology</subject><subject>Alzheimer's Disease</subject><subject>Attitude to Death</subject><subject>Attitudes</subject><subject>Caregivers - psychology</subject><subject>Carers</subject><subject>Death</subject><subject>Dementia - diagnosis</subject><subject>Dementia - mortality</subject><subject>Dementia - therapy</subject><subject>Diseases</subject><subject>Family</subject><subject>Family Relations</subject><subject>Female</subject><subject>Geriatric Assessment</subject><subject>Home Nursing - methods</subject><subject>Home Nursing - psychology</subject><subject>Humans</subject><subject>Interviews as Topic</subject><subject>Late-stage dementia</subject><subject>Long Term Care</subject><subject>Male</subject><subject>Mental illness</subject><subject>Middle Aged</subject><subject>New South Wales</subject><subject>Quality of Life</subject><subject>Respite Care - organization & administration</subject><subject>Risk Assessment</subject><subject>Sick Role</subject><subject>Stress, Psychological</subject><subject>Surveys and Questionnaires</subject><subject>Terminal Care - methods</subject><subject>Terminal Care - psychology</subject><subject>Time Factors</subject><issn>1440-6381</issn><issn>1741-6612</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2008</creationdate><recordtype>article</recordtype><sourceid>BHHNA</sourceid><recordid>eNqF0cFOwzAMANAIgdgY_ALKiVtLEidpyg0NBkiTuMA5Stdky9SuW5Nu7O_p2OCKL7bkJ8uyEcKUpLSP-2VKM04TKSlLGSEqJYQpln6doeFf47yvOSeJBEUH6CqEZY-oUuwSDajKKNA8H6K3p71fzfHOxwUubW1X0ZsHHBcWb73dBdw47Eztqz2emdbO_da2AZui6SLedKbycX8glXf2Gl04UwV7c8oj9Dl5_hi_JtP3l7fx4zSZg4CYGFVIImZMUZMXLsuAK6uMYMCByH4tQqRwynEnQOUOSgeKG85nBaOkLISAEbo7zl23zaazIerah5mtKrOyTRe0zLlguaD_Q8qB5dkB3p5gV9S21OvW16bd698r9WByBG3tozZr46JexLgOujTRaL9yzU-naee6bLymRANQqb2teqwPHyKSA8A33wGCag</recordid><startdate>20080601</startdate><enddate>20080601</enddate><creator>Russell, Cherry</creator><creator>Middleton, Heather</creator><creator>Shanley, Chris</creator><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>7U3</scope><scope>BHHNA</scope><scope>7X8</scope></search><sort><creationdate>20080601</creationdate><title>Dying with dementia: the views of family caregivers about quality of life</title><author>Russell, Cherry ; Middleton, Heather ; Shanley, Chris</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-g353t-a8b605c281a9bf77348e8a52343068710065f8f4f5389f3df384a44cb210db553</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2008</creationdate><topic>Aged</topic><topic>Aged, 80 and over</topic><topic>Aging - physiology</topic><topic>Alzheimer's Disease</topic><topic>Attitude to Death</topic><topic>Attitudes</topic><topic>Caregivers - psychology</topic><topic>Carers</topic><topic>Death</topic><topic>Dementia - diagnosis</topic><topic>Dementia - mortality</topic><topic>Dementia - therapy</topic><topic>Diseases</topic><topic>Family</topic><topic>Family Relations</topic><topic>Female</topic><topic>Geriatric Assessment</topic><topic>Home Nursing - methods</topic><topic>Home Nursing - psychology</topic><topic>Humans</topic><topic>Interviews as Topic</topic><topic>Late-stage dementia</topic><topic>Long Term Care</topic><topic>Male</topic><topic>Mental illness</topic><topic>Middle Aged</topic><topic>New South Wales</topic><topic>Quality of Life</topic><topic>Respite Care - organization & administration</topic><topic>Risk Assessment</topic><topic>Sick Role</topic><topic>Stress, Psychological</topic><topic>Surveys and Questionnaires</topic><topic>Terminal Care - methods</topic><topic>Terminal Care - psychology</topic><topic>Time Factors</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Russell, Cherry</creatorcontrib><creatorcontrib>Middleton, Heather</creatorcontrib><creatorcontrib>Shanley, Chris</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>Social Services Abstracts</collection><collection>Sociological Abstracts</collection><collection>MEDLINE - Academic</collection><jtitle>Australasian journal on ageing</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Russell, Cherry</au><au>Middleton, Heather</au><au>Shanley, Chris</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Dying with dementia: the views of family caregivers about quality of life</atitle><jtitle>Australasian journal on ageing</jtitle><addtitle>Australas J Ageing</addtitle><date>2008-06-01</date><risdate>2008</risdate><volume>27</volume><issue>2</issue><spage>89</spage><epage>92</epage><pages>89-92</pages><issn>1440-6381</issn><eissn>1741-6612</eissn><abstract>To document the views of family caregivers of persons with dementia about quality of life for their relative during the late and terminal stages of the disease, as part of an exploratory study of best quality care and support.
Fifteen former caregivers (five wives, five husbands, two sons, three daughters) participated in in-depth semistructured interviews.
Participants identified three main sets of indicators of quality of life: the physical body, the physical and social environment and treatment with respect and dignity. The constructs 'quality of life' and 'quality of care' tended to be conflated in the experience of caregivers. An important role for caregivers was to interpret and represent the subjective experience of the person with dementia.
Quality of life needs to be understood from multiple perspectives. Caregivers' views are a central part of this understanding and should be used to inform future research and service development.</abstract><cop>Australia</cop><pmid>18713199</pmid><doi>10.1111/j.1741-6612.2008.00282.x</doi><tpages>4</tpages></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 1440-6381 |
| ispartof | Australasian journal on ageing, 2008-06, Vol.27 (2), p.89-92 |
| issn | 1440-6381 1741-6612 |
| language | eng |
| recordid | cdi_pubmed_primary_18713199 |
| source | Wiley; Sociological Abstracts |
| subjects | Aged Aged, 80 and over Aging - physiology Alzheimer's Disease Attitude to Death Attitudes Caregivers - psychology Carers Death Dementia - diagnosis Dementia - mortality Dementia - therapy Diseases Family Family Relations Female Geriatric Assessment Home Nursing - methods Home Nursing - psychology Humans Interviews as Topic Late-stage dementia Long Term Care Male Mental illness Middle Aged New South Wales Quality of Life Respite Care - organization & administration Risk Assessment Sick Role Stress, Psychological Surveys and Questionnaires Terminal Care - methods Terminal Care - psychology Time Factors |
| title | Dying with dementia: the views of family caregivers about quality of life |
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