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      Acceptability and use of a patient-held communication tool for people living with dementia: a longitudinal qualitative study

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          Abstract

          Objectives

          To assess the acceptability and use of a low-cost patient-held communication tool.

          Design

          Longitudinal qualitative interviews at three time points over 18 months and document content analysis.

          Setting

          Primary and community services.

          Participants

          Twenty-eight dyads: People living with dementia in Northern Ireland and their informal carers.

          Interventions

          A patient-held healthcare ‘passport’ for people living with dementia.

          Primary and secondary outcomes

          Acceptability and use of the passport—barriers and facilitators to successful engagement.

          Results

          There was a qualified appreciation of the healthcare passport and a much more nuanced, individualistic or personalised approach to its desirability and use. How people perceive it and what they actually do with it are strongly determined by individual contexts, dementia stage and other health problems, social and family needs and capacities. We noted concerns about privacy and ambivalence about engaging with health professionals.

          Conclusion

          Such tools may be of use but there is a need for demanding, thoughtful and nuanced programme delivery for future implementation in dementia care. The incentivisation and commitment of general practitioners is crucial. Altering the asymmetrical relationship between professionals and patients requires more extensive attention.

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          Most cited references12

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          EUROCARE: a cross-national study of co-resident spouse carers for people with Alzheimer's disease: I--Factors associated with carer burden.

          Michael J. Murray, S. Banerjee, Derek A. Mann … (1999)
          The challenges presented by the increasing public health and social impact of caring for people with dementia have become clear in recent years. Previous research has identified that, while there are positive as well as negative elements to the caring role, carers are at high risk of mental health problems and that the comprehensive burden of caring has social, economic and health based elements. Co-resident carers, especially spouses, are of primary importance in maintaining people with dementia in their own homes in the community rather than in institutional settings which may be both more costly and have greater environmental poverty. There have, however, been few studies which have sought to investigate factors associated with carer burden and differences and similarities between countries. In this study we aimed to produce a cross-national profile of co-resident spouse carers across the European Community, with particular attention to: living arrangements; formal and informal support; service satisfaction; perceived burden; and psychological well-being. Twenty co-resident spouse carers of people with NINCDS-ADRDA probable dementia, who had been diagnosed as such within the past 12-36 months, were recruited from service contacts in each of 14 out of the 15 countries of the EU. All completed a semi-structured interview which included: sociodemographic data; data on health and social service use; the Carer Burden Inventory (CBI); the General Health Questionnaire-12 (GHQ-12); and open-ended qualitative questions about the experience of caring. Two hundred and eighty couples were recruited. There was marked variation in all variables of interest between countries, but there were consistently high ratings of carer burden (mean CBI scores between 28 and 52) and psychological distress (between 40% and 75% scoring 4 or more on the GHQ-12). Using multivariate analyses (generalized linear modelling) to estimate the individual associations of variables of interest with carer burden, controlling for the effects of all other variables in the model, the following results were obtained: 11.4% (p = 0.003) of the variance was accounted for by between-country variation; 4.9% (p < 0.001) by expressed financial dissatisfaction; 4.5% (p = 0.001) by lower carer age; 3.2% (p = 0.004) by difficulties with spouse behavioural deficits; and 2.0% (p = 0.024) by perceived negative social reactions. There was a low level of contact with support groups and Alzheimer's disease societies despite the samples having been of service contacts. This study confirms the high level of burden and mental distress in spouse carers for people with Alzheimer's disease in the European Community. It suggests that there are elements of burden which may vary by country but also elements which have a common effect in all. These data suggest avenues for the primary and secondary prevention of burden by addressing clinical issues (e.g. behavioural disturbance); public attitudes and education (e.g. negative social reactions); economic support for carers (e.g. financial dissatisfaction); and higher risk groups (e.g. younger spouse carers).
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            Caregiver Burden and Psychoeducational Interventions in Alzheimer’s Disease: A Review

            N. Beinart, J Weinman, D Wade … (2012)
            Background: Caring for a patient with Alzheimer’s disease (AD) is associated with poor quality of life and deteriorating health for the caregiver. Methods: This comprehensive review was performed to investigate the current literature on caregiver burden, factors affecting caregiver burden and the effectiveness of different types of intervention. Results: Successful psychoeducational interventions for caregivers have included provision of information about AD, care planning, advice about patient management and the importance of self-care, skills training to aid patient management, stress management training, and problem-solving and decision-making guidance. Conclusion: Interventions that are individually tailored to the caregiver are particularly effective at reducing caregiver burden and should be further investigated. The use of effective pharmacological treatment for the improvement and/or stabilisation of AD symptoms in the patient is also likely to improve caregiver burden.
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              The estimated cost of dementia in Japan, the most aged society in the world

              Mitsuhiro Sado, Akira Ninomiya, Ryo Shikimoto … (2018)
              Objective Dementia has become a global critical issue. It is estimated that the global cost of dementia was 818 billion USD in 2015. The situation in Japan, which is the most aged country in the world, should be critical. However, the societal cost of dementia in Japan has not yet been estimated. This study was designed to estimate cost of dementia from societal perspective. Design We estimated the cost from societal perspective with prevalence based approach. Setting, participants and measures Main data sources for the parameters to estimate the costs are the National Data Base, a nationwide representative individual-level database for healthcare utilization, the Survey of Long-Term Care Benefit Expenditures, a nationwide survey based on individual-level secondary data for formal long-term care utilization, and the results of an informal care time survey for informal care cost. We conducted the analyses with ‘probabilistic modeling’ using the parameters obtained to estimate the costs of dementia. We also projected future costs. Results The societal costs of dementia in Japan in 2014 were estimated at JPY 14.5 trillion (se 66.0 billion). Of these, the costs for healthcare, long-term care, and informal care are JPY 1.91 trillion (se 4.91 billion), JPY 6.44 trillion (se 63.2 billion), and JPY 6.16 trillion (se 12.5 billion) respectively. The cost per person with dementia appeared to be JPY5.95 million (se 27 thousand). The total costs would reach JPY 24.3 trillion by 2060, which is 1.6 times higher than that in 2014. Conclusions The societal cost of dementia in Japan appeared to be considerable. Interventions to mitigate this impact should be considered.
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                Author and article information

                Journal
                Journal ID (nlm-ta): BMJ Open
                Journal ID (iso-abbrev): BMJ Open
                Journal ID (hwp): bmjopen
                Journal ID (publisher-id): bmjopen
                Title: BMJ Open
                Publisher: BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                ISSN (Electronic): 2044-6055
                Publication date Collection: 2020
                Publication date (Electronic): 5 May 2020
                Volume: 10
                Issue: 5
                Electronic Location Identifier: e036249
                Affiliations
                [1 ]departmentPsychology , Ulster University , Coleraine, UK
                [2 ]departmentBamford Centre for Mental Health and Wellbeing , Ulster University, Coleraine Campus , Coleraine, UK
                [3 ]departmentSocial Policy , Ulster University , Belfast, UK
                [4 ]departmentGeriatrics , Altnagelvin Hospitals Health and Social Services Trust , Londonderry, UK
                [5 ]departmentNursing and Health Sciences , Ulster University , Belfast, UK
                [6 ]departmentDepartment of Nursing and Health Sciences , Ulster University, Coleraine Campus , Coleraine, UK
                [7 ]departmentIntegrated Care Clinic , Western Health & Social Care NHS Trust , Derry, UK
                [8 ]departmentChief Executive Officer , Alzheimer’s Society Northern Ireland , Belfast, UK
                [9 ]departmentCentre for Person-centred Practice Research , Queen Margaret University , Edinburgh, UK
                Author notes
                [Correspondence to ] Professor Gerard Leavey; g.leavey@ 123456ulster.ac.uk
                Author information
                http://orcid.org/0000-0001-8411-8919
                Article
                Publisher ID: bmjopen-2019-036249
                DOI: 10.1136/bmjopen-2019-036249
                PMC ID: 7223142
                PubMed ID: 32376757
                SO-VID: 615121f4-fe08-4ac8-b50a-7b15a0331dc7
                Copyright © © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
                License:

                This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/.

                History
                Date received : 09 December 2019
                Date revision received : 24 March 2020
                Date accepted : 06 April 2020
                Funding
                Funded by: R&D Division of the Public Health Agency Northern Ireland;
                Award ID: COM/5017/14
                Categories
                Subject: Communication
                Subject: 1506
                Subject: 1684
                Series title: Original research
                Custom metadata
                special-feature unlocked

                ScienceOpen disciplines: Medicine
                Keywords: dementia,caregivers,patient-held records,communication,information
                Data availability:
                ScienceOpen disciplines: Medicine
                Keywords: dementia, caregivers, patient-held records, communication, information

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