Disclosing a dementia diagnosis: what do patients and family consider important?
Identifieur interne : 002284 ( Main/Exploration ); précédent : 002283; suivant : 002285Disclosing a dementia diagnosis: what do patients and family consider important?
Auteurs : Maree Mastwyk [Australie] ; David Ames [Australie] ; Kathryn A. Ellis [Australie] ; Edmond Chiu [Australie] ; Briony Dow [Australie]Source :
- International psychogeriatrics [ 1741-203X ] ; 2014.
Descripteurs français
- KwdFr :
- Aidants (psychologie), Attitude envers la santé (MeSH), Australie (MeSH), Comportement du consommateur (MeSH), Démence (diagnostic), Démence (psychologie), Démence (thérapie), Entretien psychologique (méthodes), Facteurs socioéconomiques (MeSH), Femelle (MeSH), Humains (MeSH), Mâle (MeSH), Psychoanaleptiques (usage thérapeutique), Rappel mnésique (MeSH), Recherche qualitative (MeSH), Relations famille-professionnel de santé (MeSH), Révélation de la vérité (MeSH), Sujet âgé (MeSH), Échelles d'évaluation en psychiatrie (MeSH), Évaluation gériatrique (méthodes).
- MESH :
- diagnostic : Démence.
- méthodes : Entretien psychologique, Évaluation gériatrique.
- psychologie : Aidants, Démence.
- thérapie : Démence.
- usage thérapeutique : Psychoanaleptiques.
- Attitude envers la santé, Australie, Comportement du consommateur, Facteurs socioéconomiques, Femelle, Humains, Mâle, Rappel mnésique, Recherche qualitative, Relations famille-professionnel de santé, Révélation de la vérité, Sujet âgé, Échelles d'évaluation en psychiatrie.
- Wicri :
- geographic : Australie.
English descriptors
- KwdEn :
- Aged (MeSH), Attitude to Health (MeSH), Australia (MeSH), Caregivers (psychology), Consumer Behavior (MeSH), Dementia (diagnosis), Dementia (psychology), Dementia (therapy), Female (MeSH), Geriatric Assessment (methods), Humans (MeSH), Interview, Psychological (methods), Male (MeSH), Mental Recall (MeSH), Professional-Family Relations (MeSH), Psychiatric Status Rating Scales (MeSH), Psychotropic Drugs (therapeutic use), Qualitative Research (MeSH), Socioeconomic Factors (MeSH), Truth Disclosure (MeSH).
- MESH :
- chemical , therapeutic use : Psychotropic Drugs.
- geographic : Australia.
- diagnosis : Dementia.
- methods : Geriatric Assessment, Interview, Psychological.
- psychology : Caregivers, Dementia.
- therapy : Dementia.
- Aged, Attitude to Health, Consumer Behavior, Female, Humans, Male, Mental Recall, Professional-Family Relations, Psychiatric Status Rating Scales, Qualitative Research, Socioeconomic Factors, Truth Disclosure.
Abstract
BACKGROUND
The literature available on the format of the feedback session following assessment of memory impairment is minimal. This study explored how this information should be presented from the perspective of patients and their families.
METHODS
Thirty-two semi-structured interviews were conducted with memory clinic patients and their carer at the clinic visit that followed the feedback session, to ask: what they recalled, what they found helpful, and what they thought was the best way to disclose a diagnosis of dementia. A second interview was conducted with 14 patient/carer dyads at their next appointment.
RESULTS
Recall of information from the feedback session was variable. Most respondents (76% of patients; 66% of carers) thought that a direct approach was best when informing the patient of a dementia diagnosis, and that both written information and compassion demonstrated by the doctor were helpful. Opinions on whether all the information should be given at once or in stages were divided.
CONCLUSIONS
The current format of the feedback session needs revision to improve recall. Patients and their families want a direct approach to be used by a supportive and professional doctor with an opportunity to ask questions. They want the support of a family member or friend when they are told of their diagnosis and they would like a written summary to refer to afterwards.
DOI: 10.1017/S1041610214000751
PubMed: 24784005
Affiliations:
Links toward previous steps (curation, corpus...)
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Ellis</name><affiliation wicri:level="1"><nlm:affiliation>Florey Institute of Neuroscience and Mental Health,155 Oak Street,Parkville 3052,Victoria,Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Florey Institute of Neuroscience and Mental Health,155 Oak Street,Parkville 3052,Victoria</wicri:regionArea><wicri:noRegion>Victoria</wicri:noRegion></affiliation></author><author><name sortKey="Chiu, Edmond" sort="Chiu, Edmond" uniqKey="Chiu E" first="Edmond" last="Chiu">Edmond Chiu</name><affiliation wicri:level="1"><nlm:affiliation>Academic Unit for Psychiatry of Old Age,University of Melbourne,Victoria,Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Academic Unit for Psychiatry of Old Age,University of Melbourne,Victoria</wicri:regionArea><wicri:noRegion>Victoria</wicri:noRegion></affiliation></author><author><name sortKey="Dow, Briony" sort="Dow, Briony" uniqKey="Dow B" first="Briony" last="Dow">Briony Dow</name><affiliation wicri:level="1"><nlm:affiliation>National Ageing Research Institute,Poplar Road,Parkville 3052,Victoria,Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>National Ageing Research Institute,Poplar Road,Parkville 3052,Victoria</wicri:regionArea><wicri:noRegion>Victoria</wicri:noRegion></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2014">2014</date><idno type="RBID">pubmed:24784005</idno><idno type="pmid">24784005</idno><idno type="doi">10.1017/S1041610214000751</idno><idno type="wicri:Area/Main/Corpus">002205</idno><idno type="wicri:explorRef" wicri:stream="Main" wicri:step="Corpus" wicri:corpus="PubMed">002205</idno><idno type="wicri:Area/Main/Curation">002205</idno><idno type="wicri:explorRef" wicri:stream="Main" wicri:step="Curation">002205</idno><idno type="wicri:Area/Main/Exploration">002205</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Disclosing a dementia diagnosis: what do patients and family consider important?</title><author><name sortKey="Mastwyk, Maree" sort="Mastwyk, Maree" uniqKey="Mastwyk M" first="Maree" last="Mastwyk">Maree Mastwyk</name><affiliation wicri:level="1"><nlm:affiliation>Florey Institute of Neuroscience and Mental Health,155 Oak Street,Parkville 3052,Victoria,Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Florey Institute of Neuroscience and Mental Health,155 Oak Street,Parkville 3052,Victoria</wicri:regionArea><wicri:noRegion>Victoria</wicri:noRegion></affiliation></author><author><name sortKey="Ames, David" sort="Ames, David" uniqKey="Ames D" first="David" last="Ames">David Ames</name><affiliation wicri:level="1"><nlm:affiliation>National Ageing Research Institute,Poplar Road,Parkville 3052,Victoria,Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>National Ageing Research Institute,Poplar Road,Parkville 3052,Victoria</wicri:regionArea><wicri:noRegion>Victoria</wicri:noRegion></affiliation></author><author><name sortKey="Ellis, Kathryn A" sort="Ellis, Kathryn A" uniqKey="Ellis K" first="Kathryn A" last="Ellis">Kathryn A. Ellis</name><affiliation wicri:level="1"><nlm:affiliation>Florey Institute of Neuroscience and Mental Health,155 Oak Street,Parkville 3052,Victoria,Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Florey Institute of Neuroscience and Mental Health,155 Oak Street,Parkville 3052,Victoria</wicri:regionArea><wicri:noRegion>Victoria</wicri:noRegion></affiliation></author><author><name sortKey="Chiu, Edmond" sort="Chiu, Edmond" uniqKey="Chiu E" first="Edmond" last="Chiu">Edmond Chiu</name><affiliation wicri:level="1"><nlm:affiliation>Academic Unit for Psychiatry of Old Age,University of Melbourne,Victoria,Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Academic Unit for Psychiatry of Old Age,University of Melbourne,Victoria</wicri:regionArea><wicri:noRegion>Victoria</wicri:noRegion></affiliation></author><author><name sortKey="Dow, Briony" sort="Dow, Briony" uniqKey="Dow B" first="Briony" last="Dow">Briony Dow</name><affiliation wicri:level="1"><nlm:affiliation>National Ageing Research Institute,Poplar Road,Parkville 3052,Victoria,Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>National Ageing Research Institute,Poplar Road,Parkville 3052,Victoria</wicri:regionArea><wicri:noRegion>Victoria</wicri:noRegion></affiliation></author></analytic><series><title level="j">International psychogeriatrics</title><idno type="eISSN">1741-203X</idno><imprint><date when="2014" type="published">2014</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Aged (MeSH)</term><term>Attitude to Health (MeSH)</term><term>Australia (MeSH)</term><term>Caregivers (psychology)</term><term>Consumer Behavior (MeSH)</term><term>Dementia (diagnosis)</term><term>Dementia (psychology)</term><term>Dementia (therapy)</term><term>Female (MeSH)</term><term>Geriatric Assessment (methods)</term><term>Humans (MeSH)</term><term>Interview, Psychological (methods)</term><term>Male (MeSH)</term><term>Mental Recall (MeSH)</term><term>Professional-Family Relations (MeSH)</term><term>Psychiatric Status Rating Scales (MeSH)</term><term>Psychotropic Drugs (therapeutic use)</term><term>Qualitative Research (MeSH)</term><term>Socioeconomic Factors (MeSH)</term><term>Truth Disclosure (MeSH)</term></keywords><keywords scheme="KwdFr" xml:lang="fr"><term>Aidants (psychologie)</term><term>Attitude envers la santé (MeSH)</term><term>Australie (MeSH)</term><term>Comportement du consommateur (MeSH)</term><term>Démence (diagnostic)</term><term>Démence (psychologie)</term><term>Démence (thérapie)</term><term>Entretien psychologique (méthodes)</term><term>Facteurs socioéconomiques (MeSH)</term><term>Femelle (MeSH)</term><term>Humains (MeSH)</term><term>Mâle (MeSH)</term><term>Psychoanaleptiques (usage thérapeutique)</term><term>Rappel mnésique (MeSH)</term><term>Recherche qualitative (MeSH)</term><term>Relations famille-professionnel de santé (MeSH)</term><term>Révélation de la vérité (MeSH)</term><term>Sujet âgé (MeSH)</term><term>Échelles d'évaluation en psychiatrie (MeSH)</term><term>Évaluation gériatrique (méthodes)</term></keywords><keywords scheme="MESH" type="chemical" qualifier="therapeutic use" xml:lang="en"><term>Psychotropic Drugs</term></keywords><keywords scheme="MESH" type="geographic" xml:lang="en"><term>Australia</term></keywords><keywords scheme="MESH" qualifier="diagnosis" xml:lang="en"><term>Dementia</term></keywords><keywords scheme="MESH" qualifier="diagnostic" xml:lang="fr"><term>Démence</term></keywords><keywords scheme="MESH" qualifier="methods" xml:lang="en"><term>Geriatric Assessment</term><term>Interview, Psychological</term></keywords><keywords scheme="MESH" qualifier="méthodes" xml:lang="fr"><term>Entretien psychologique</term><term>Évaluation gériatrique</term></keywords><keywords scheme="MESH" qualifier="psychologie" xml:lang="fr"><term>Aidants</term><term>Démence</term></keywords><keywords scheme="MESH" qualifier="psychology" xml:lang="en"><term>Caregivers</term><term>Dementia</term></keywords><keywords scheme="MESH" qualifier="therapy" xml:lang="en"><term>Dementia</term></keywords><keywords scheme="MESH" qualifier="thérapie" xml:lang="fr"><term>Démence</term></keywords><keywords scheme="MESH" qualifier="usage thérapeutique" xml:lang="fr"><term>Psychoanaleptiques</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Aged</term><term>Attitude to Health</term><term>Consumer Behavior</term><term>Female</term><term>Humans</term><term>Male</term><term>Mental Recall</term><term>Professional-Family Relations</term><term>Psychiatric Status Rating Scales</term><term>Qualitative Research</term><term>Socioeconomic Factors</term><term>Truth Disclosure</term></keywords><keywords scheme="MESH" xml:lang="fr"><term>Attitude envers la santé</term><term>Australie</term><term>Comportement du consommateur</term><term>Facteurs socioéconomiques</term><term>Femelle</term><term>Humains</term><term>Mâle</term><term>Rappel mnésique</term><term>Recherche qualitative</term><term>Relations famille-professionnel de santé</term><term>Révélation de la vérité</term><term>Sujet âgé</term><term>Échelles d'évaluation en psychiatrie</term></keywords><keywords scheme="Wicri" type="geographic" xml:lang="fr"><term>Australie</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p><b>BACKGROUND</b></p><p>The literature available on the format of the feedback session following assessment of memory impairment is minimal. This study explored how this information should be presented from the perspective of patients and their families.</p></div><div type="abstract" xml:lang="en"><p><b>METHODS</b></p><p>Thirty-two semi-structured interviews were conducted with memory clinic patients and their carer at the clinic visit that followed the feedback session, to ask: what they recalled, what they found helpful, and what they thought was the best way to disclose a diagnosis of dementia. A second interview was conducted with 14 patient/carer dyads at their next appointment.</p></div><div type="abstract" xml:lang="en"><p><b>RESULTS</b></p><p>Recall of information from the feedback session was variable. Most respondents (76% of patients; 66% of carers) thought that a direct approach was best when informing the patient of a dementia diagnosis, and that both written information and compassion demonstrated by the doctor were helpful. Opinions on whether all the information should be given at once or in stages were divided.</p></div><div type="abstract" xml:lang="en"><p><b>CONCLUSIONS</b></p><p>The current format of the feedback session needs revision to improve recall. Patients and their families want a direct approach to be used by a supportive and professional doctor with an opportunity to ask questions. They want the support of a family member or friend when they are told of their diagnosis and they would like a written summary to refer to afterwards.</p></div></front></TEI><pubmed><MedlineCitation Status="MEDLINE" Owner="NLM"><PMID Version="1">24784005</PMID><DateCompleted><Year>2015</Year><Month>02</Month><Day>09</Day></DateCompleted><DateRevised><Year>2016</Year><Month>10</Month><Day>20</Day></DateRevised><Article PubModel="Print-Electronic"><Journal><ISSN IssnType="Electronic">1741-203X</ISSN><JournalIssue CitedMedium="Internet"><Volume>26</Volume><Issue>8</Issue><PubDate><Year>2014</Year><Month>Aug</Month></PubDate></JournalIssue><Title>International psychogeriatrics</Title><ISOAbbreviation>Int Psychogeriatr</ISOAbbreviation></Journal><ArticleTitle>Disclosing a dementia diagnosis: what do patients and family consider important?</ArticleTitle><Pagination><MedlinePgn>1263-72</MedlinePgn></Pagination><ELocationID EIdType="doi" ValidYN="Y">10.1017/S1041610214000751</ELocationID><Abstract><AbstractText Label="BACKGROUND" NlmCategory="BACKGROUND">The literature available on the format of the feedback session following assessment of memory impairment is minimal. This study explored how this information should be presented from the perspective of patients and their families.</AbstractText><AbstractText Label="METHODS" NlmCategory="METHODS">Thirty-two semi-structured interviews were conducted with memory clinic patients and their carer at the clinic visit that followed the feedback session, to ask: what they recalled, what they found helpful, and what they thought was the best way to disclose a diagnosis of dementia. A second interview was conducted with 14 patient/carer dyads at their next appointment.</AbstractText><AbstractText Label="RESULTS" NlmCategory="RESULTS">Recall of information from the feedback session was variable. Most respondents (76% of patients; 66% of carers) thought that a direct approach was best when informing the patient of a dementia diagnosis, and that both written information and compassion demonstrated by the doctor were helpful. Opinions on whether all the information should be given at once or in stages were divided.</AbstractText><AbstractText Label="CONCLUSIONS" NlmCategory="CONCLUSIONS">The current format of the feedback session needs revision to improve recall. Patients and their families want a direct approach to be used by a supportive and professional doctor with an opportunity to ask questions. They want the support of a family member or friend when they are told of their diagnosis and they would like a written summary to refer to afterwards.</AbstractText></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Mastwyk</LastName><ForeName>Maree</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Florey Institute of Neuroscience and Mental Health,155 Oak Street,Parkville 3052,Victoria,Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Ames</LastName><ForeName>David</ForeName><Initials>D</Initials><AffiliationInfo><Affiliation>National Ageing Research Institute,Poplar Road,Parkville 3052,Victoria,Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Ellis</LastName><ForeName>Kathryn A</ForeName><Initials>KA</Initials><AffiliationInfo><Affiliation>Florey Institute of Neuroscience and Mental Health,155 Oak Street,Parkville 3052,Victoria,Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Chiu</LastName><ForeName>Edmond</ForeName><Initials>E</Initials><AffiliationInfo><Affiliation>Academic Unit for Psychiatry of Old Age,University of Melbourne,Victoria,Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Dow</LastName><ForeName>Briony</ForeName><Initials>B</Initials><AffiliationInfo><Affiliation>National Ageing Research Institute,Poplar Road,Parkville 3052,Victoria,Australia.</Affiliation></AffiliationInfo></Author></AuthorList><Language>eng</Language><PublicationTypeList><PublicationType UI="D016428">Journal Article</PublicationType><PublicationType UI="D013485">Research Support, Non-U.S. Gov't</PublicationType></PublicationTypeList><ArticleDate DateType="Electronic"><Year>2014</Year><Month>05</Month><Day>01</Day></ArticleDate></Article><MedlineJournalInfo><Country>England</Country><MedlineTA>Int Psychogeriatr</MedlineTA><NlmUniqueID>9007918</NlmUniqueID><ISSNLinking>1041-6102</ISSNLinking></MedlineJournalInfo><ChemicalList><Chemical><RegistryNumber>0</RegistryNumber><NameOfSubstance UI="D011619">Psychotropic Drugs</NameOfSubstance></Chemical></ChemicalList><CitationSubset>IM</CitationSubset><MeshHeadingList><MeshHeading><DescriptorName UI="D000368" MajorTopicYN="N">Aged</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D001294" MajorTopicYN="N">Attitude to Health</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D001315" MajorTopicYN="N" Type="Geographic">Australia</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D017028" MajorTopicYN="N">Caregivers</DescriptorName><QualifierName UI="Q000523" MajorTopicYN="Y">psychology</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D003258" MajorTopicYN="N">Consumer Behavior</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D003704" 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Recall</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D011368" MajorTopicYN="Y">Professional-Family Relations</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D011569" MajorTopicYN="N">Psychiatric Status Rating Scales</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D011619" MajorTopicYN="N">Psychotropic Drugs</DescriptorName><QualifierName UI="Q000627" MajorTopicYN="Y">therapeutic use</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D036301" MajorTopicYN="N">Qualitative Research</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D012959" MajorTopicYN="N">Socioeconomic Factors</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D014342" MajorTopicYN="Y">Truth Disclosure</DescriptorName></MeshHeading></MeshHeadingList></MedlineCitation><PubmedData><History><PubMedPubDate PubStatus="entrez"><Year>2014</Year><Month>5</Month><Day>3</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate 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sort="Dow, Briony" uniqKey="Dow B" first="Briony" last="Dow">Briony Dow</name><name sortKey="Ellis, Kathryn A" sort="Ellis, Kathryn A" uniqKey="Ellis K" first="Kathryn A" last="Ellis">Kathryn A. 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