TalkingMats as a decision aid to promote involvement in choice and decision-making around home care services for older people with mild to moderate dementia – study protocol for a randomized controlled trial

(2023) 23:244 Dunér et al. BMC Geriatrics https://doi.org/10.1186/s12877-023-03956-5 BMC Geriatrics STUDY PROTOCOL Open Access TalkingMats as a decision aid to promote involvement in choice and decision‑making around home care services for older people with mild to moderate dementia – study protocol for a randomized controlled trial Anna Dunér1*, Angela Bångsbo2 and Tina M. Olsson1,3 Abstract Background In Sweden, 72% of people with dementia live in ordinary housing. Of these, 50% receive home care services. Older people with dementia may benefit from developments in decision-making support which aim to facilitate their ability to communicate their personal needs and preferences with care managers and staff in home care services. In this study, we will test and evaluate the use of TalkingMats in Swedish municipal home care services for older people with mild to moderate dementia. TalkingMats is a low-technology communication tool, to help people with communication difficulties express their views. It uses a simple system of picture symbols which are placed on a textured mat. This study will provide insight into the extent to which TalkingMats benefits older people with dementia to feel more involved in decisions related to home care services. In addition, this study will assess the extent to which the use of TalkingMats promotes service providers’ efforts to involve service recipients in decision making. The implementation of TalkingMats in home care services will also be studied. Methods A parallel group, two-armed randomized controlled trial design in which TalkingMats and Usual Conversation Method will be compared. Two specific situations where older people with dementia must make decisions about home care services will be studied. First, a follow-up needs-assessment conversation between study participants and care managers will be studied. Second, a conversation between participants and home care staff regarding the delivery of the decided home care services will be studied. In addition, a qualitative approach will be used to gain an understanding of study participant and service provider experiences of the impact and implementation of TalkingMats. Discussion The combined exploratory, descriptive, and experimental study design is considered an important strength which will facilitate multi-facetted knowledge production concerning the involvement and communication needs of older people with dementia generally and within the context of home care services specifically. Combining qualitative and quantitative methods will maximize our ability to assess the effects of TalkingMats. Trial registration ClinicalTrials.gov ID: NCT05561998. Registered in September 28, 2022. *Correspondence: Anna Dunér Full list of author information is available at the end of the article © The Author(s) 2023. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativeco mmons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Dunér et al. BMC Geriatrics (2023) 23:244 Page 2 of 9 Keywords Decision aid, Dementia, Home care services, Involvement, Randomized controlled trial Background In this study we will test and evaluate the use of TalkingMats (TM) as a decision aid in conversations between home care service providers and older people with mild to moderate dementia within Swedish municipal eldercare. In Sweden, approximately 160,000 people live with dementia. In addition, it is estimated that half of the population over 90 years of age live with dementia [1]. In a Swedish study, Odzakovic et al. [2] found that of those with dementia, 72% were living in ordinary housing. Of these, 50% were receiving home care services. In Sweden, when an older person is no longer able to manage daily independent living, they can apply for assistance from the municipal home care services. The extent of the support ultimately provided through home care services is based on a needs assessment. Needs assessments are performed by municipal care managers. If eligible, home care services may include for example help with household chores, personal care, and/or social activities. The purpose of the present study is to increase our understanding of how TM impacts the involvement of older people with dementia in decisions made within the context of home care services. During the last decade, developments in Swedish eldercare have been dominated by a drive for individualized support with an emphasis on consumer choice [3, 4]. The intent of increased consumer choice being not only to increase choice and control for individuals receiving services, but also to increase the ability to customize services for individual service recipients and increase the quality of the services provided. The Swedish Social Services Act [5] states that eldercare should aim at strengthening older people’s ability to live an independent life, in dignity, and with well-being [4]. Additionally, the Swedish National guidelines on dementia care [1] stipulate that people with dementia are covered by the same policy intentions as other groups using eldercare. Needs-assessments and conversations about the provision of home care services for older people with impaired cognition are especially challenging [6]. Care managers who conduct needs-assessments and make decisions about home care services often lack training in communicating with people with dementia or other cognitive impairments. In addition, service recipients often lack access to information regarding the services available to them [7]. Home care staff who deliver support often express difficulties with interpreting the wishes of older people with impaired cognition or dementia [8]. In contrast to other countries, Sweden lacks decision-making support for older people making choices about social care [9, 10]. The lack of opportunities for supported decision-making may force service users with the most complex needs into passivity. However, such support may facilitate the ability of older people with dementia to communicate their needs and preferences wit (...truncated)