Innovative methods for involving people with dementia and carers in the policymaking process

Abstract

Background There are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, particularly for people with dementia and their family carers. Principles of engagement and inclusion in democratic processes are as important for these groups as other citizens. We used two innovative methods to increase involvement of people with dementia and family carers in the policymaking process in Ireland, specifically in relation to impending legislation on home care. Method A Policy Café was co‐produced with people with dementia using a World Café methodology. A Carer's Assembly was co‐produced with caregivers of people with dementia using a citizen's assembly model. Results Ten people with dementia discussed policy developments they wanted to see implemented in relation to diagnosis and home care. Twenty‐eight dementia caregivers prioritized four topics: home care; respite services; psychosocial supports; and financial supports. Film and illustrations were used to create accessible messages for policy‐makers to inform their decision making. Discussion Involving people with dementia and carers in policy development requires time and creativity to facilitate and maximize their involvement. Co‐production is essential to ensure the priorities of participants are identified, expressed and communicated effectively. A cumulative sequence of events and messages can generate significant engagement with policy‐makers. Policy‐makers need to hear the direct and authentic voice of people with dementia and carers when faced with important policy decisions. Patient or public contribution People with dementia and carers were involved in study design, data analysis and presentation.

Supporting the involvement of older adults with complex needs in evaluation of outcomes in long‐term care at home programmes

“…With the global ageing of the population it is becoming increasingly important that we find ways to engage and involve all older people in policymaking and evaluating public programmes that affect their lives. 1 However, involvement and engagement can present challenges with large numbers of older people living with chronic and degenerative conditions including dementia. 1,2 One key area that could benefit from greater patient involvement is the evaluation of aged care policies and programmes.…”

“… 1 However, involvement and engagement can present challenges with large numbers of older people living with chronic and degenerative conditions including dementia. 1 , 2…”

“…1 However, involvement and engagement can present challenges with large numbers of older people living with chronic and degenerative conditions including dementia. 1,2 One key area that could benefit from greater patient involvement is the evaluation of aged care policies and programmes. Of particular need are those that emphasize ageing at home, with longterm care services delivered in community settings.…”

Co-designing complex interventions with people living with dementia and their supporters

“…Public and Patient Involvement may include carers, people living with dementia or both, with fewer studies involving the public or professionals ( Burton et al, 2019 ). Several recent publications have illustrated the possibilities and strengths of involving people with lived experience of dementia in co-creation of interventions ( O'Connor, 2020 ), and how participatory action research methods such as the World Café approach, where issues are discussed in small groups, then insights from each group are shared with the larger group, can be helpful in engaging this population ( Keogh et al, 2021 ).…”

Strategies for engaging senior citizens and their informal caregivers in health policy development: a scoping review protocol

“…Few examples for caregiver engagement in health policy development exist. For example, Keogh et al 23 described the use of an innovative approach, being Carers assembly to increase the involvement of caregivers of people with dementia in the policymaking process in Ireland.…”