Caring for a family member or friend with dementia at the end of life: A scoping review and implications for palliative care practice
Background: Although people with dementia receive substantial care from informal sources, there is limited research available that investigates how these carers experience end-of-life care. Aim: This review aimed to identify what is currently known about carers’ experiences of providing end-of-life...
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Veröffentlicht in: | Palliative medicine 2018-03, Vol.32 (3), p.643-656 |
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creator | Broady, Timothy R Saich, Freya Hinton, Tom |
description | Background:
Although people with dementia receive substantial care from informal sources, there is limited research available that investigates how these carers experience end-of-life care.
Aim:
This review aimed to identify what is currently known about carers’ experiences of providing end-of-life care to a family member or friend with dementia and draw implications for palliative care policy and service provision.
Design:
A scoping literature review was conducted, first using a targeted key word search, followed by assessments of eligibility based on title and then abstract content.
Data sources:
Records were sourced through PsycINFO, PubMed and CINAHL databases. Peer-reviewed papers published between 2000 and 2016, reporting on data collected directly from carers, were included for review.
Results:
Carers’ experience centred on relationships (with care recipients, family and friends and health care professionals) and the specific context of caring for someone with dementia. These broad categories of carers’ experiences had clear influences on them personally, particularly in relation to their sense of self and their wellbeing.
Conclusion:
Palliative care services would benefit from ensuring holistic approaches to supporting people with dementia, their carers and wider family networks. Tailoring services to the specific context of dementia would enable effective, personalised support throughout extended periods leading up to care recipient death as well as through the challenges faced beyond bereavement. |
doi_str_mv | 10.1177/0269216317748844 |
format | Article |
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Although people with dementia receive substantial care from informal sources, there is limited research available that investigates how these carers experience end-of-life care.
Aim:
This review aimed to identify what is currently known about carers’ experiences of providing end-of-life care to a family member or friend with dementia and draw implications for palliative care policy and service provision.
Design:
A scoping literature review was conducted, first using a targeted key word search, followed by assessments of eligibility based on title and then abstract content.
Data sources:
Records were sourced through PsycINFO, PubMed and CINAHL databases. Peer-reviewed papers published between 2000 and 2016, reporting on data collected directly from carers, were included for review.
Results:
Carers’ experience centred on relationships (with care recipients, family and friends and health care professionals) and the specific context of caring for someone with dementia. These broad categories of carers’ experiences had clear influences on them personally, particularly in relation to their sense of self and their wellbeing.
Conclusion:
Palliative care services would benefit from ensuring holistic approaches to supporting people with dementia, their carers and wider family networks. Tailoring services to the specific context of dementia would enable effective, personalised support throughout extended periods leading up to care recipient death as well as through the challenges faced beyond bereavement.</description><identifier>ISSN: 0269-2163</identifier><identifier>EISSN: 1477-030X</identifier><identifier>DOI: 10.1177/0269216317748844</identifier><identifier>PMID: 29343195</identifier><language>eng</language><publisher>London, England: SAGE Publications</publisher><subject>Adult ; Aged ; Aged, 80 and over ; Bereavement ; Caregivers ; Caregivers - psychology ; Caregiving ; Dementia ; Dementia - nursing ; End of life decisions ; Family - psychology ; Family networks ; Female ; Friends - psychology ; Friendship ; Hospice and Palliative Care Nursing - methods ; Hospice care ; Humans ; Informal care ; Literature reviews ; Male ; Medical personnel ; Middle Aged ; Palliative care ; Qualitative Research ; Quality of Life - psychology ; Systematic review ; Terminal Care - psychology ; Well being</subject><ispartof>Palliative medicine, 2018-03, Vol.32 (3), p.643-656</ispartof><rights>The Author(s) 2018</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c365t-f6be1c9947a5cb9c51c1aefdffaba4864a318486eee73b5ab0636326f59a034c3</citedby><cites>FETCH-LOGICAL-c365t-f6be1c9947a5cb9c51c1aefdffaba4864a318486eee73b5ab0636326f59a034c3</cites><orcidid>0000-0002-4341-1868</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://journals.sagepub.com/doi/pdf/10.1177/0269216317748844$$EPDF$$P50$$Gsage$$H</linktopdf><linktohtml>$$Uhttps://journals.sagepub.com/doi/10.1177/0269216317748844$$EHTML$$P50$$Gsage$$H</linktohtml><link.rule.ids>314,780,784,21819,27924,27925,30999,43621,43622</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/29343195$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Broady, Timothy R</creatorcontrib><creatorcontrib>Saich, Freya</creatorcontrib><creatorcontrib>Hinton, Tom</creatorcontrib><title>Caring for a family member or friend with dementia at the end of life: A scoping review and implications for palliative care practice</title><title>Palliative medicine</title><addtitle>Palliat Med</addtitle><description>Background:
Although people with dementia receive substantial care from informal sources, there is limited research available that investigates how these carers experience end-of-life care.
Aim:
This review aimed to identify what is currently known about carers’ experiences of providing end-of-life care to a family member or friend with dementia and draw implications for palliative care policy and service provision.
Design:
A scoping literature review was conducted, first using a targeted key word search, followed by assessments of eligibility based on title and then abstract content.
Data sources:
Records were sourced through PsycINFO, PubMed and CINAHL databases. Peer-reviewed papers published between 2000 and 2016, reporting on data collected directly from carers, were included for review.
Results:
Carers’ experience centred on relationships (with care recipients, family and friends and health care professionals) and the specific context of caring for someone with dementia. These broad categories of carers’ experiences had clear influences on them personally, particularly in relation to their sense of self and their wellbeing.
Conclusion:
Palliative care services would benefit from ensuring holistic approaches to supporting people with dementia, their carers and wider family networks. Tailoring services to the specific context of dementia would enable effective, personalised support throughout extended periods leading up to care recipient death as well as through the challenges faced beyond bereavement.</description><subject>Adult</subject><subject>Aged</subject><subject>Aged, 80 and over</subject><subject>Bereavement</subject><subject>Caregivers</subject><subject>Caregivers - psychology</subject><subject>Caregiving</subject><subject>Dementia</subject><subject>Dementia - nursing</subject><subject>End of life decisions</subject><subject>Family - psychology</subject><subject>Family networks</subject><subject>Female</subject><subject>Friends - psychology</subject><subject>Friendship</subject><subject>Hospice and Palliative Care Nursing - methods</subject><subject>Hospice care</subject><subject>Humans</subject><subject>Informal care</subject><subject>Literature reviews</subject><subject>Male</subject><subject>Medical personnel</subject><subject>Middle Aged</subject><subject>Palliative care</subject><subject>Qualitative Research</subject><subject>Quality of Life - psychology</subject><subject>Systematic review</subject><subject>Terminal Care - psychology</subject><subject>Well being</subject><issn>0269-2163</issn><issn>1477-030X</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2018</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNp1kUtLxDAUhYMoOo7uXUnAjZtq0qRp404GXyC4UXBXbjM3M5G-TDqKP8D_ber4AMHVTXK-e264h5ADzk44z_NTliqdciXiWRaFlBtkwmWeJ0ywx00yGeVk1HfIbghPjHHBlNwmO6kWUnCdTcj7DLxrF9R2ngK10Lj6jTbYVOhpfLLeYTunr25Y0jk22A4OKAx0WCIdhc7S2lk8o-c0mK4fnTy-OHylEFXX9LUzMLiuDZ8TeqhrF-8vSA14pL0HMziDe2TLQh1w_6tOycPlxf3sOrm9u7qZnd8mRqhsSKyqkButZQ6ZqbTJuOGAdm4tVCALJUHwIlZEzEWVQcWUUCJVNtPAhDRiSo7Xvr3vnlcYhrJxwWBdQ4vdKpRcF1oxVsT9TMnRH_SpW_k2_q5M4x6FYDkvIsXWlPFdCB5t2XvXgH8rOSvHiMq_EcWWwy_jVdXg_KfhO5MIJGsgwAJ_p_5r-AFL4JlE</recordid><startdate>201803</startdate><enddate>201803</enddate><creator>Broady, Timothy R</creator><creator>Saich, Freya</creator><creator>Hinton, Tom</creator><general>SAGE Publications</general><general>Sage Publications Ltd</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7QJ</scope><scope>ASE</scope><scope>FPQ</scope><scope>K6X</scope><scope>K9.</scope><scope>NAPCQ</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0002-4341-1868</orcidid></search><sort><creationdate>201803</creationdate><title>Caring for a family member or friend with dementia at the end of life: A scoping review and implications for palliative care practice</title><author>Broady, Timothy R ; Saich, Freya ; Hinton, Tom</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c365t-f6be1c9947a5cb9c51c1aefdffaba4864a318486eee73b5ab0636326f59a034c3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2018</creationdate><topic>Adult</topic><topic>Aged</topic><topic>Aged, 80 and over</topic><topic>Bereavement</topic><topic>Caregivers</topic><topic>Caregivers - psychology</topic><topic>Caregiving</topic><topic>Dementia</topic><topic>Dementia - nursing</topic><topic>End of life decisions</topic><topic>Family - psychology</topic><topic>Family networks</topic><topic>Female</topic><topic>Friends - psychology</topic><topic>Friendship</topic><topic>Hospice and Palliative Care Nursing - methods</topic><topic>Hospice care</topic><topic>Humans</topic><topic>Informal care</topic><topic>Literature reviews</topic><topic>Male</topic><topic>Medical personnel</topic><topic>Middle Aged</topic><topic>Palliative care</topic><topic>Qualitative Research</topic><topic>Quality of Life - psychology</topic><topic>Systematic review</topic><topic>Terminal Care - psychology</topic><topic>Well being</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Broady, Timothy R</creatorcontrib><creatorcontrib>Saich, Freya</creatorcontrib><creatorcontrib>Hinton, Tom</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>British Nursing Index</collection><collection>British Nursing Index (BNI) (1985 to Present)</collection><collection>British Nursing Index</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Premium</collection><collection>MEDLINE - Academic</collection><jtitle>Palliative medicine</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Broady, Timothy R</au><au>Saich, Freya</au><au>Hinton, Tom</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Caring for a family member or friend with dementia at the end of life: A scoping review and implications for palliative care practice</atitle><jtitle>Palliative medicine</jtitle><addtitle>Palliat Med</addtitle><date>2018-03</date><risdate>2018</risdate><volume>32</volume><issue>3</issue><spage>643</spage><epage>656</epage><pages>643-656</pages><issn>0269-2163</issn><eissn>1477-030X</eissn><abstract>Background:
Although people with dementia receive substantial care from informal sources, there is limited research available that investigates how these carers experience end-of-life care.
Aim:
This review aimed to identify what is currently known about carers’ experiences of providing end-of-life care to a family member or friend with dementia and draw implications for palliative care policy and service provision.
Design:
A scoping literature review was conducted, first using a targeted key word search, followed by assessments of eligibility based on title and then abstract content.
Data sources:
Records were sourced through PsycINFO, PubMed and CINAHL databases. Peer-reviewed papers published between 2000 and 2016, reporting on data collected directly from carers, were included for review.
Results:
Carers’ experience centred on relationships (with care recipients, family and friends and health care professionals) and the specific context of caring for someone with dementia. These broad categories of carers’ experiences had clear influences on them personally, particularly in relation to their sense of self and their wellbeing.
Conclusion:
Palliative care services would benefit from ensuring holistic approaches to supporting people with dementia, their carers and wider family networks. Tailoring services to the specific context of dementia would enable effective, personalised support throughout extended periods leading up to care recipient death as well as through the challenges faced beyond bereavement.</abstract><cop>London, England</cop><pub>SAGE Publications</pub><pmid>29343195</pmid><doi>10.1177/0269216317748844</doi><tpages>14</tpages><orcidid>https://orcid.org/0000-0002-4341-1868</orcidid></addata></record> |
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issn | 0269-2163 1477-030X |
language | eng |
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subjects | Adult Aged Aged, 80 and over Bereavement Caregivers Caregivers - psychology Caregiving Dementia Dementia - nursing End of life decisions Family - psychology Family networks Female Friends - psychology Friendship Hospice and Palliative Care Nursing - methods Hospice care Humans Informal care Literature reviews Male Medical personnel Middle Aged Palliative care Qualitative Research Quality of Life - psychology Systematic review Terminal Care - psychology Well being |
title | Caring for a family member or friend with dementia at the end of life: A scoping review and implications for palliative care practice |
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