hqlo unmet needs 2010

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  • RESEARCH Open Access

    Unmet needs, quality of life and support networksof people with dementia living at homeClaudia Miranda-Castillo1,2, Bob Woods3, Kumari Galboda4, Sabu Oomman4,5, Charles Olojugba4, Martin Orrell2*

    Abstract

    Background: There is lack of evidence about the unmet needs of people with dementia (PWD) living at homeand the predictors of high levels of unmet needs. The main aim of this study was to identify the relationshipbetween unmet needs, social networks and quality of life of PWD living at home.

    Methods: One hundred and fifty two community dwelling PWD and 128 carers were interviewed about PWDsneeds, social networks, quality of life and other functional and psychological factors. All the interviews with PWDwere carried out at their homes. Interviews with carers were undertaken either at PWDs home, their own home orat the health centre. Whenever possible, PWD and carers were interviewed separately. The data collection tookplace between November 2005 and July 2007. The majority of participants (129, 84.9%) were recruited fromNational Health Services (NHS) and the rest (23, 15.1%) were recruited from other organisations such as socialservices and voluntary organizations in the UK.

    Results: The most frequent unmet needs for PWD were daytime activities (77, 50.7%), company (60, 39.5%), andhelp with psychological distress (47, 30.9%). Higher number of behavioural and psychological symptoms, low-community involvement social networks, having a younger carer and higher carers anxiety were found to bepredictors of higher unmet needs in PWD. Social networks and behavioural and psychological symptoms had anindirect effect on PWDs self-rated quality of life through unmet needs.

    Conclusions: Interventions aiming to reduce unmet needs, through the treatment of behavioural andpsychological symptoms and the involvement of PWD in the community, would potentially improve PWDs qualityof life.

    BackgroundUnmet needs in PWD have been found to be associatedwith higher anxiety, depression, and challenging beha-viours in care homes [1] as associated with being older,cognitive impairment and living alone in the community[2]. Hoe et al. [3] found that, in care homes, higherquality of life rated separately by residents and staff wasassociated with fewer unmet needs in residents. How-ever, this relationship has not been studied in a commu-nity sample. Evidence shows that PWD with limitedsocial networks are more vulnerable and at risk. Wenger[4] found that the most common social network typesin PWD were family-dependent (30%), which is reliantupon a few family members with few friends or other

    community contacts; and private-restricted (26%), whichhad small social networks, with very few local kin,friends or other community contacts. Wilcox et al. [5]also found that low level of social support was asso-ciated with high score in overall need. It has also beenfound that PWD with higher unmet needs reported bytheir carers are more likely to either be placed in a carehome or die [6]. This is the first published study toinvestigate the relationship between unmet needs, socialnetworks and quality of life in PWD living at home aim-ing to identify factors that are associated with and/orpredict unmet needs which could allow, ultimately, theimplementation of interventions aimed to reduce unmetneeds of PWD. Unmet needs may be associated withlower quality of life [3,7] and smaller social networks[5,8] but in dementia the relationship between socialnetworks and quality of life has not been studied pre-viously. We hypothesize that larger social networks will

    * Correspondence: m.orrell@ucl.ac.uk2Department of Mental Health Sciences, University College London, 67-73Riding House Street, London, W1W 7EJ, UKFull list of author information is available at the end of the article

    Miranda-Castillo et al. Health and Quality of Life Outcomes 2010, 8:132http://www.hqlo.com/content/8/1/132

    2010 Miranda-Castillo et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the CreativeCommons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, andreproduction in any medium, provided the original work is properly cited.

    mailto:m.orrell@ucl.ac.ukhttp://creativecommons.org/licenses/by/2.0

  • be associated with better quality of life and that the rela-tionship between social networks and quality of life willbe mediated by unmet needs.

    MethodsSampleThe study design was a cross sectional survey. A total of152 PWD living at home and their 128 informal carerswere recruited from health and social services, andvoluntary organisations in North East London (65 PWDand 54 carers), Cambridgeshire (81 PWD and 68 carers)and Liverpool (6 PWD and 6 carers). Inclusion criteriafor PWD were: being aged 60 or over, having a diagno-sis of dementia according to DSM-IV and living athome (not in institutions). A person was considered aninformal carer (spouse, relative, friend or neighbour)when he/she was knowledgeable about the person withdementia and spent a minimum of 4 hours a week indirect contact (face to face) with them. Only one personwas considered the nominated carer. A sample, similarto those obtained from previous community studies ofdementia in terms of living situation, was recruited: 65%of participants living with another person and 35% livingalone [9,10].At each centre, the manager or appropriate member

    of staff was requested to make a first approach eitherwith the PWDs carers or the PWD themselves (depend-ing on dementia severity and/or living situation) to givethem the Information Sheet and to discuss if they werewilling to be approached by the researcher regardingthis study. Participants who had no objection were con-tacted by the researcher by phone and were given moreinformation about the study as required. In addition,details of people who had attended the centre (PWDsname, carers name, address, phone, etc.) were providedand a letter was sent to the carer and/or patient includ-ing information sheets about the study. One week after,the researcher contacted them by phone, answered anyquestions they might have, explained the study andlooked for their willingness to participate. If the poten-tial participant agreed to be involved, either theresearcher or an interviewer arranged a day to carry outthe interview at their homes.

    ProcedureThe study was carried out in accordance with the latestversion of the Declaration of Helsinki. Ethical approvalwas granted by East London & the City HA ResearchEthics Committee 3. All participants gave informed con-sent. Once the interviewer was at the PWDs or carershome, they answered any further queries and soughtinformed consent as follows: written consent by signinga Consent Form was required from people with demen-tia and their caregivers. In order to achieve this, the

    interviewer approached potential subjects to explain thestudy and to inform them about their right to withdrawat anytime. Some PWD (11, 7.3%) were unable to pro-vide written consent. When this occurred, the inter-viewer sought their assent (verbal consent). During thisprocess, the interviewer made sure that he/she hadtaken as much time and care in explaining the informa-tion about this research as simply as possible. The inter-viewer avoided using long sentences and attempted toreduce any distractions. To find out if the participantshave understood the information given, the interviewerobserved their ability to ask any relevant questions andalso requested the participant to repeat back the infor-mation and how it would relate to them. In addition,the interviewer clarified any doubts about the study andreiterated their right to withdraw at anytime.Interviews were carried out by an experienced clinical

    psychologist and old age psychiatrists who were trainedto undertake the interview. All the interviews with PWDwere carried out at their homes. Interviews with carerswere undertaken either at the PWDs home, their ownhome or at a health centre (e.g. memory clinic, day hos-pital). Whenever possible, the PWD and the carer wereinterviewed separately. However, some carers wanted tobe present during the PWDs interview. In this situation,the interviewer emphasized the fact that he/she wasinterested in knowing both parties views about thePWDs needs and quality of life; and, as they wereunique human beings, both opinions do not necessarilyhave to be coincident and both were considered valid.Interviews were terminated immediately in presence ofany sign of discomfort. In addition, if the conditions athome were not appropriate to undertake the interviewwith the carer, the interviewer arranged a next meetingin other location.Using standardised instruments, PWD were inter-

    viewed about their needs, cognitive status and quality oflife. This interview took an average of 30 minutesdepending on dementia severity. Carers were inter-viewed about the PWDs sociodemographic details,needs, behavioural and psychological symptoms, func-tional status, quality of life, social networks, and servicesreceived. In addition, carers were assessed about theirown sociodemographic details, depression, anxiety andburden. This interview took about two hours and a half.

    MeasuresInstruments administered to the person with dementiaCamberwell Assessment of Need for the Elderly(CANE) [11,12] The CANE is a comprehensive toolwhich offers a structured evaluation of needs in olderpeople in 24 areas of social, psychological, physical, andenvironmental needs rated as no need, met need orunmet need. The CANE also asks about formal and

    Miranda-Castillo et al. Health and Quality of Life Outcomes 2010, 8:132http://www.hqlo.com/content/8/1/132

    Page 2 of 14

  • informal support/services. The CANE has shown goodlevels of reliability (a = 0.99) and validity (correla

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