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Support and information needs following a diagnosis of dementia with Lewy bodies

Published online by Cambridge University Press:  02 September 2015

Alison Killen Open the ORCID record for Alison Killen [Opens in a new window] ,
Darren Flynn ,
Aoife De Brún ,
Nicola O’Brien ,
John O’Brien ,
Alan J. Thomas ,
Ian McKeith  and
John-Paul Taylor
Alison Killen*
Affiliation:
Institute of Neuroscience, Newcastle University, Campus for Ageing and Vitality, Newcastle upon Tyne, NE4 5PL, UK
Darren Flynn
Affiliation:
Institute of Health and Society (Decision Making and Organisation of Care group), Newcastle University, Newcastle Upon Tyne, NE4 5PL, UK
Aoife De Brún
Affiliation:
Institute of Health and Society (Decision Making and Organisation of Care group), Newcastle University, Newcastle Upon Tyne, NE4 5PL, UK
Nicola O’Brien
Affiliation:
Institute of Health and Society, Newcastle University, Newcastle Upon Tyne, NE4 5PL, UK
John O’Brien
Affiliation:
Department of Psychiatry, University of Cambridge, Addenbrooke's Hospital, Cambridge CB2 0QC, UK
Alan J. Thomas
Affiliation:
Institute of Neuroscience, Newcastle University, Campus for Ageing and Vitality, Newcastle upon Tyne, NE4 5PL, UK
Ian McKeith
Affiliation:
Institute of Neuroscience, Newcastle University, Campus for Ageing and Vitality, Newcastle upon Tyne, NE4 5PL, UK
John-Paul Taylor
Affiliation:
Institute of Neuroscience, Newcastle University, Campus for Ageing and Vitality, Newcastle upon Tyne, NE4 5PL, UK
*
Correspondence should be addressed to: Mrs Alison Killen, Institute of Neuroscience, Newcastle University, Campus for Ageing and Vitality, NE4 5PL, UK. Phone: +44 (0)191 2081340. Email: alison.killen@newcastle.ac.uk.
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Abstract

Background:

There is a lack of knowledge regarding the information and support needs of people with dementia with Lewy bodies (DLB) and their families around the time of diagnosis.

Methods:

A volunteer sample of patients with DLB and their family members completed a web survey hosted by the UK based Lewy Body Society in May 2014. This focused on past experiences of information and support received and what information and support needs would have been beneficial at the time of diagnosis.

Results:

One hundred and twenty five adults responded to the survey. The majority were first degree relatives or spouses of people with DLB (n = 107, 86%). Approximately 50% (n = 61) reported they had not received any tangible support at diagnosis. Thirteen categories of information needs were identified.

Conclusions:

People with DLB and their family members are currently inadequately supported at diagnosis. There is a need to address information needs related to symptomology, medication and prognosis, including provision of emotional and instrumental social support. Seeking the views of recipients of information and support is important in ensuring relevance and appropriateness prior to the development of interventions to improve the knowledge and coping skills of people with DLB and caregivers.

Keywords

dementia with Lewy bodiespsychosocial interventionscarers
Type
Research Article
Information
International Psychogeriatrics , Volume 28 , Issue 3 , March 2016 , pp. 495 - 501
Copyright
Copyright © International Psychogeriatric Association 2015 

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