Testing a support package on wellbeing of carers of people with dementia: a randomised controlled trial

Arm 1: Usual care group Carers of people with dementia may receive information and support from their geriatrician when attending clinic appointments with the person with dementia. They may also receive information and support from formal sources such as general practitioners or community aged care services, or informal sources such as Dementia Australia. [The nature of this support is likely to differ depending on the individual concerns of the person with dementia and the carer themselves, as well as the willingness of individuals to actively seek information support. Thus, standard care may slightly differ for each participant allocated to the usual care arm.] Arm 2: Intervention group Carers allocated to the intervention group will receive standard care (as per Arm 1) plus access to a multicomponent intervention supported by a trained Intervention Facilitator. Intervention Facilitator(s) will have a degree in health (e.g. nursing, occupational therapy, psychology or similar), be experienced in working with older people and have effective communication skills. Facilitator(s) will undergo training prior to commencing the intervention. Facilitator(s) will be asked to complete the online Dementia Practice Improvement (DPI) Series (4 hours in total; https://dementialearning.org.au/dpi-series/), which covers a range of topics that will encourage those providing dementia care to reflect on their own practice and improve their dementia knowledge and practice. Facilitator(s) will also have access to a suite of resources, including published Australian Clinical Practice Guidelines for Dementia, as well as resources from Dementia Australia (e.g. fact sheets). Face-to-face support group sessions: Carers in this arm will be invited to attend a 1.5 hour face-to-face group session following the completion of the baseline survey, and every two months following for the duration of the study. Led by the Facilitator(s), attendees at these group sessions will include other carers enrolled in the trial (maximum 8-10 members per group). Where possible, groups will be organised according to geographical location, so that group sessions are scheduled at a location convenient to members (e.g. afternoon or evening at HMRI or private clinic of recruiting geriatrician). At the initial group session, the Facilitator will facilitate group introductions; provide information about the purpose and potential benefits of the iSupport program, the symptom checklist and the group sessions. The Facilitator will provide a hard copy and summarise the contents of the WHO iSupport manual, including the topics covered in each of the modules and the activities. The iSupport manual covers the following topics: General information about dementia; Information related to being a carer; Self-care; Providing care for the person with dementia; and Addressing symptoms of dementia. The Facilitator will emphasise that people may have helpful tips and strategies that have worked for them in the past not listed in the resources provided, and that they are welcome to share these with others. The content of each group session will be guided by members, with the role of the Facilitator to identify areas where there may be commonalities and provide advice and support. Monitoring and feedback of progress: Carers will be asked to complete a comprehensive assessment of symptoms of concern they have observed in the person with dementia at baseline. Throughout the 6 month intervention, carers will be invited to complete brief monthly assessments of symptoms of concern. Assessments will be completed via hard copy or an online survey, or telephone with the Facilitator according to participant preference. The repeat assessments will be used to monitor symptoms of concern identified at baseline, while also identifying new concerns that have emerged since previous assessments. Prior to each group session, the Facilitator will review the monthly assessments to identify concerns common to group members, which may be raised as part of the group discussion. The Facilitator will also conduct a follow up calls 2 weeks following each of the group sessions to discuss any issues of concern flagged and ask carers whether they have implemented any of the recommended strategies. Where any significant changes or new concerns are identified, additional or alternative management options will be recommended. A stepped care approach will be utilised, where the first option will be the least intensive (e.g. provision of iSupport booklet, bi-monthly support group). More intensive options will be reserved for those who do not benefit from first-line treatment (e.g. telephone follow-up by Facilitator, referrals to specialists for identified concerns). The Facilitator will also explore perceived barriers to adhering to recommendations, and where specific barriers are identified, suggest practical strategies to overcome these barriers.