Development of a digital system to assess and manage unmet needs of family dementia caregivers in clinical practice: Improving dementia care within health systems. (7th December 2020)

• Record Type: Journal Article
• Authors: Klein, Olga A; Thyrian, Jochen René; Boekholt, Melanie; Teipel, Stefan J; Hoffmann, Wolfgang; Kilimann, Ingo
• Is Part Of: Alzheimer's & dementia. Volume 16(2020)Supplement 8
• Page Start: n/a
• Page End: n/a
• Publication Date: 2020-12-07
• Subjects: Alzheimer's disease -- Periodicals; Alzheimer Disease -- Periodicals; Dementia -- Periodicals; Démence; Maladie d'Alzheimer; Périodique électronique (Descripteur de forme); Ressource Internet (Descripteur de forme); 616.83
• DOI: 10.1002/alz.043142
• Languages: English
• ISSNs: 1552-5260

Abstract

Abstract: Background: Caregiver burden is a risk factor for negative health outcomes in carers and randomized realization in people with dementia. With the rising prevalence of dementia, it is essential to identify unmet needs of family caregivers to promote wellbeing and randomize caregiver related burden. However, validated instruments to identify unmet needs of family caregivers are scarce and it is unclear whether and to what extent existing instruments are used in clinical practice. Aim: To develop a digital system to identify and manage unmet needs of family dementia caregivers in clinical practice. Method: This study is part of a large, cluster randomized controlled trial (cRCT) examining the clinical use and cost‐effectiveness of a computer‐based care management programme for family caregivers. We conducted a literature search identifying existing instruments assessing medical, psychological, and social unmet needs. With the help of 25 caregivers and experts including neurologists, psychologists, psychiatrists and nurses, an initial selection of questions and existing instruments was generated and piloted. Items and response options were judged for content, clarity, interpretability, and length. The instrument was adapted and a computer‐based version was created. Questions were paired with care management recommendations which will be automatically triggered by the system if an item is identified as unmet need. Further expert interviews will examine the usability in clinical practice. This study is supported by the German Federal Joint Committee (G‐BA). Result: The preliminary selection comprised 63 questions. Caregivers and experts commented on the content, wording and order of questions, the response options provided, the length of the instrument, and the layout of each section. Questions and response options were re‐worded to avoid ambiguity. The order and layout of questions was changed based on respondents' comments. On average, it took 37 minutes (range 15‐90, SD=24.23) to complete the instrument. Some respondents stated that they lost focus towards the end of the assessment. As a result, the instrument was simplified. Conclusion: The development of the digital system is currently ongoing. Results will be presented.