Decision aids to support decision-making in dementia care: a systematic review

Abstract

Objectives:We aimed to critically evaluate decision aids developed for practitioners and caregivers when providing care for someone with dementia or for use by people with dementia themselves. Decision aids may be videos, booklets, or web-based tools that explicitly state the decision, provide information about the decision, and summarize options along with associated benefits and harms. This helps guide the decision maker through clarifying the values they place on the benefits or harms of the options.Design:We conducted a systematic review of peer-reviewed literature in electronic databases (CINAHL, The Cochrane Library, EMBASE, MEDLINE, and PsychINFO) in March 2018. Reference lists were searched for relevant papers and citations tracked. Data were synthesized with meta-analysis and narrative synthesis. Papers were included if they met the following criteria: 1) the focus of the paper was on the evaluation of a decision aid; 2) the decision aid was used in dementia care; and 3) the decision aid was aimed at professionals, people with dementia, or caregivers.Results:We identified 3618 studies, and 10 studies were included, covering three topics across six decision aids: 1) support with eating/feeding options, 2) place of care, and 3) goals of care. The mode of delivery and format of the decision aids varied and included paper-based, video-based, and audio-based decision aids. The decision aids were shown to be effective, increasing knowledge and the quality of communication. The meta-analysis demonstrated that decisions are effective in reducing decisional conflict among caregivers (standardized mean difference = −0.50, 95% confidence interval [ − 0.97, − 0.02]).Conclusion:Decision aids offer a promising approach for providing support for decision-making in dementia care. People are often faced with more than one decision, and decisions are often interrelated. The decision aids identified in this review focus on single topics. There is a need for decision aids that cover multiple topics in one aid to reflect this complexity and better support caregivers.

Supporting families in end-of-life care and bereavement in the COVID-19 era

“…Carers may benefit from support with making decisions (Mathew et al, 2016) to better understand their options and the benefits of when a palliative approach may be appropriate. Decision aids which provide information on the decision and the options available have shown promise to support family carers (Davies et al, 2019a), this may include novel approaches such as simple rules of thumb. Rules of thumb have been successfully used with professionals when making decisions about end-of-life care for people with dementia (Davies et al, 2018).…”

Mapping and understanding the decision-making process for providing nutrition and hydration to people living with dementia: a systematic review

“…Implications for future research, policy, and clinical practice This review has identified the necessary steps in making decisions regarding nutrition and hydration for PLWD; it can guide healthcare practitioners and policy makers on what issues they should be aware of, how and when to address the issues in the decision-making process and whom they should involve in the decisions. In the later stages, family caregivers and practitioners can be facilitated with decisional support, for example, a decision aid which has been found to increase the level of knowledge, improve quality of communication and reduce decisional conflicts [75]. This review helps to guide the focus of decisional support and identify mechanisms to overcome many of the identified barriers.…”

Dementia, Treatment Decisions, and the UN Convention on the Rights of Persons With Disabilities. A New Framework for Old Problems

“…In another study, Sinclair et al, show how it is possible to support the person in making decisions by employing “Augmentative and Alternative Communication” (AAC) techniques combining multiple sensory modalities (e.g., aural and visual), observing facial expressions, body language, sounds made by the person, or eye contact, and using structured approaches to communication ( 106 ). Support can also come from IT decisional aids sending reminders to the person or guiding them through the decisional process ( 111 , 112 ). Finally, just creating a quieter and tidier environment and encouraging the person to express their wishes ( 21 , 62 , 109 ), or defending them from others' disempowering behavior ( 105 ) may be important means of support.…”