The Dementia Lifestyle Coach: a pilot study of a support and coaching program for people recently diagnosed with early dementia

Treatment Arms This parallel group design will have an intervention group and a wait-list control group. The wait-list control group will receive the intervention after 6 months. A wait-list control group was selected rather than no-treatment control group because the study investigators considered it unethical to offer no support to participants, further offering the intervention to the control group would allow a greater sample with which to test acceptability of and fidelity to the intervention. Intervention description The Dementia Lifestyle Coach program is a 14 session psychoeducation, counselling and coaching program for people recently diagnosed with dementia. Sessions are hour-long and held weekly for the first 2 months, then fortnightly for 2 months, then monthly for the last 2 months (14 sessions in total). Sessions are face-to-face in an individual format and delivered by a registered psychologist or rehabilitation counsellor. In addition, participants receive support (monthly telephone conversations) from a trained peer who lives with dementia. The research team has developed a program manual with aims, discussion topics and homework for program sessions. The program is built on a frame of Acceptance Commitment Therapy (Hayes et al., 2006), and includes elements of positive psychology (Proyer et al., 2015) and coaching (Olsen and Nesbitt, 2010). Participants may choose in consultation with their counsellor to invite a family member or supporter to attend some of the sessions if this would support their adjustment to the diagnosis and implementation of lifestyle choices. The program has 3 stages: 1) Adjusting to the diagnosis (sessions 1-6) – reframing what it means to have dementia 2) Living a good life (sessions 7-12) – values based living, goal setting, achieving at least 150 mins a week of physical, cognitive and social activity, referrals as appropriate for occupational therapy, speech pathology, cognitive rehabilitation or physiotherapy. 3) Planning for change (sessions 13-14) – emotional and practical strategies Peer supporters living with dementia will be recruited through Dementia Australia and Dementia Alliance International. They will receive 8 hours of blended training including 3 hours face to face, 4 hours video conference, 1 hour readings and individual learning. The training will include the following topics: 'Establishing relationships and rapport'; 'Structure of the program'; 'Co-designing the peer support component of dementia lifestyle coach program'; 'Skills practice and role playing'; 'Intentional story telling”/active listening skills'; 'Stages of grief/managing grief/sadness'; 'Clinical and program procedures of the study'. Peer Supporters will also be supported through monthly meetings with peers and the research team and individual debriefing after every support conversation. Supporters will have a conversation (by telephone or in person) with the person with dementia each month in order to share their experiences. Study records and peer supervision will be used to assess and maintain fidelity.