Mélanie Couture, Ph.D Francine Ducharme, Ph.D Choosing a living environment for a relative with dementia: Developing a decision-aid for family carers based on a systematic review of qualitative studies Hello everyone! As the presenter noted, my name is Melanie Couture and my presentation is entitled : Choosing a living environment for a relative with dementia: Developing a decision-aid for family carers based on a systematic review of qualitative studies. The content of this presentation is based on my postdoctoral research project supervised by Professor Francine Ducharme. Mélanie Couture, Ph.D Francine Ducharme, Ph.D

CONTEXT OF THE STUDY For family carers, deciding which living environment is best for a relative with dementia is one of the most stressful situation of their trajectory Too often the decision is made in a crisis situation and this can render the process all the more difficult Healthcare professionals have few clinical tools at their disposal to support family carers through this difficult decision-making process Studies have showed that one of the most difficult decision for carers is to chose a living environment for their relative with dementia. In addition, this decision is often made in a crisis situation. For example, the relative with dementia might be hospitalised or the carer might be dealing with health problems. Carers expect health care professionals to support them in these difficult times. However, healthcare professionals have few clinical tools to support family carers through this decision-making process.

AIM OF THE STUDY To develop a decision-aid for family carers to facilitate the choice of a living environment for their relative with dementia Develop a decision-aid for family carers to facilitate the choice of a living environment tailored to the needs of a relative with dementia Decision-aids clinical tools that support users by structuring the decision-making process with the collaboration of healthcare professionals Useful when the decision depends on the person’s values and preferences Consequently, the aim of the study was to develop a decision-aid for family carers to facilitate the choice of a living environment for their relative with dementia. Decision aids are clinical tools that support users by structuring the decision-making process with the help of health care professionals This type of tool is especially useful when the decision is based on the person’s values and preferences. (O’Connor, Llewellyin-Thomas, & Flood, 2004)

METHOD SYSTEMATIC REVIEW OF QUALITATIVE STUDIES To explore the main concerns of carers during this decision-making process; To explore contextual factors that inhibit or facilitate the decision-making process. Thematic synthesis was used to extract the predominant themes emerging from the results section of the selected papers To develop the preliminary version of the decision aid, we did a systematic review of qualitative studies To explore the main concerns of carers during this decision-making process; And to also explore the contextual factors that inhibit or facilitate the decision-making process. Thematic synthesis was performed by analysing the results section of selected paper.

METHOD SYSTEMATIC REVIEW OF QUALITATIVE STUDIES Selected papers had to: 1. Present empirical data about the decision-making process of family carers regarding placement of a relative with dementia; 2. Follow a qualitative methodology; 3. Be written in English or French. Pubmed, PsychInfo, CINAHL, Ageline and reference lists  Total: N= 20 empirical studies Documentation of the quality of papers using COREQ grid (Tong, Sainsbury, & Craig, 2007) No consensus about the evaluation of the methodological quality of papers to be included in systematic qualitative reviews No papers were excluded from the review on the basis of poor quality To be included in the systematic review, selected papers had to : We searched for papers in … Overall, 20 empirical studies were included in the review. We documented the quality of papers using COREQ grid, but because there are no consensus about the evaluation of qualitative papers, none were excluded on the basis of poor quality.

RESULTS CHARACTERISTICS OF SELECTED PAPERS Mainly from USA (N=11), Canada (N=4) and UK (N=2) Qualitative approach Grounded theory (N=6) Thematic analysis (N=5) Phenomenology (N=2) Other (N=7) Data collection Before placement (N=3) After placement (N=10) Before or after placement (N=5) Before and after placement (N=2) The results of the systematic review demonstrated that the main concerns of carers revolved around two main themes: Evaluating the current living environment and Evaluating the potential living environments. When evaluating the current living environment, carers think about… As for the potential living environments, carers evaluate …

RESULTS CHARACTERISTICS OF CARERS 447 carers interviewed (N=4 to N=89) 16 studies had at least 80% women (2 studies interviewed only men) Relationship to person with dementia 18 studies interviewed spouses (3 only spouses) 14 interviewed children 5 interviewed siblings 2 not specified The results of the systematic review demonstrated that the main concerns of carers revolved around two main themes: Evaluating the current living environment and Evaluating the potential living environments. When evaluating the current living environment, carers think about… As for the potential living environments, carers evaluate …

RESULTS MAIN CONCERNS OF CARERS Evaluating the current living environment Physical and cognitive states of the relative with dementia Security of the relative with dementia and of the entourage Physical and psychological abilities of the carer Formal help Informal help Evaluating the potential living environments Quality of care (establishment and personnel) Geographical proximity Financial cost The results of the systematic review demonstrated that the main concerns of carers revolved around two main themes: Evaluating the current living environment and Evaluating the potential living environments. When evaluating the current living environment, carers think about… As for the potential living environments, carers evaluate …

RESULTS CONTEXTUAL FACTORS Acceptability of the change in living environment for stakeholders Carers Relatives with dementia Families/friends Healthcare professionals Results of the systematic review also demonstrated that the decision-making process of carers is value-laden. The most important contextual factor is the acceptability of the change in living environment for the carer, the relative with dementia, family and friends and also healthcare professionals.

DAC-CLERD DECISION-AID FOR CARERS : CHOOSING A LIVING ENVIRONMENT FOR A RELATIVE WITH DEMENTIA The preliminary version of the decision-aid was developed according to the results of the systematic review. It is called DAC-CLERD

DAC-CLERD CHARACTERISTICS OF THE DECISION-AID 10 open-ended questions to explore main concerns and contextual factors Designed for carers that have expressed a desire to discuss a change in living environment for their relative with dementia; To be used by a healthcare professional in a one hour session with the carer to promote partnership: To identify the needs of the carer and of the relative with dementia To guide future interventions for assisting the dyad to make a well-informed decision The decision-aid comprises 10 It is designed for

DAC-CLERD INTRODUCTION You have expressed concerns about the living environment of your relative with memory problems. The purpose of today’s encounter is to help you examine the situation in depth and make a well-informed decision.

DAC-CLERD SECTION 1: EVALUATION OF CURRENT AND POTENTIAL LIVING ENVIRONMENTS 1.1 “What is it about your situation that makes you think that keeping your relative at home is still a viable option?” 1.2 “What is it about your situation that is prompting you to consider a change in living environment for your relative?” 1.3 “How might such a change in living environment appeal to you as an option?”

DAC-CLERD SECTION 2: ACCEPTABILITY OF A CHANGE IN LIVING ENVIRONMENT 2.1 “When you consider the idea of a change in living environment for your relative, how do you feel?” 2.2 “If I were to ask you to tell me, on a scale of 0 to 10, how ready you are to move your relative to a new living environment (0 not at all ready and 10 totally ready), what would you say?” 1 2 3 4 5 6 7 8 9 10 2.3 “How do the people around you react to the possibility of moving your relative to a new living environment?”

DAC-CLERD SECTION 3: IDENTIFYING INFORMATIONAL AND SUPPORT NEEDS 3.1 “What is it about your situation that makes it harder for you to make such a decision?” 3.2 “What is it about your situation that makes it easier for you to make such a decision?” 3.3 “Are you missing any information right now that would make it easier for you to make such a decision?” 3.4 “Given the discussion we just had, what is the most pressing need you have that we could work on together in order to make it easier for you to make such a decision?”

CONCLUSION The review of qualitative studies provided important data on the main concerns of carers and on the contextual factors related to their decision-making process This systematic approach allowed the development of a concise and practical decision-aid to help healthcare professionals better support family carers A validation and field-testing phase is undergoing to refine the preliminary version of this innovative clinical tool

Thank you for your attention! ANY QUESTIONS?