Effects on quality of life and family caregiving experiences by the Namaste Care Family program for advanced dementia

Quality of life of people with advanced dementia in the Netherlands can be improved. People may be isolated as they cannot participate anymore in the activities that are offered. Some present challenging behaviors, and families may be frustrated with limited contact with their loved ones. A US program called Namaste Care aims to increase quality of life and comfort specifically for these people. It incorporates person-centered and palliative care approaches and includes end-of-life care. Loving touch, presence of others, and engaging people in meaningful activities, such as gentle personal grooming, are central. Evidence accumulates that the program successfully changed the lives of people and their families in US, UK, and Australian nursing homes. In particular, it improved behavior, reduced use of psychotropic medications and did not increase health care costs. With the committed support of the developers, experts, and an end-user panel with families and volunteers, we propose to modify the program to sustainably fit it into the Dutch health care landscape. The adapted Namaste Care Family program will emphasize family and volunteer involvement, and end-of-life care. In 16 nursing homes, a cluster-randomized controlled trial will assess if the Dutch Namaste Care Family program improves outcomes in a cost-effective manner. We will match pairs of homes on ongoing psychosocial and family programs before we randomize to the intervention or control conditions. The primary outcomes are patients’ quality of life and families’ positive caregiving experiences. These are measured with the valid Dutch version of the Quality of Life in Late-Stage Dementia (QUALID) scale, and the validated Dutch Positive Experiences Scale (PES). Assessments are at baseline and multiple times over 12 months and also include an after-death assessment up to after 24 months, for efficient longitudinal analyses of data of 192 patients enrolled at baseline. Secondary patient outcomes, all measured with valid Dutch-version instruments, are (dis)comfort, behavior, health problems, and psychotropic medications. Secondary family outcomes are caregiver burden, (pre)grief, and perceptions of caregiving role. Costs from a societal perspective are measured with the Dutch standardized TOPICS-MDS. Semi-structured qualitative interviews with families, volunteers, nurses and managers will assess feasibility, accessibility, and sustainability. We will adapt and (pilot)test the program also in the community, anticipating more people with advanced dementia staying there and the importance of helping family caregivers to achieve the best possible quality of life and positive caregiving experiences. To assess effects and the most effective components (elements) of the program, we will perform longitudinal mediation Structural Equation Modeling (SEM) analyses. Based on literature and experiences with Namaste elsewhere (Annex 1), we refine the testing of effects in three ways. First, we test mediation through increased person-centeredness, patient engagement, and family visits (instrument translation starts spring 2014). Second, we will test if the degree to which program elements are implemented at the individual level affect outcomes, also separately for touch and non-touch activities. Third, we will test if effects differ for subgroups (moderation) such as male patients, those with agitation or apathy, in pain (for moderating patient outcomes) and by family caregiving burden at baseline (for family outcomes). An economic evaluation will relate the difference in societal costs to the difference in quality of life and positive caregiving experiences attributed to Namaste Care Family. Both a cost-effectiveness and a cost-utility analysis will be performed. Statistical uncertainty will be estimated using bootstrapping, and results presented using cost-effectiveness planes and cost-effectiveness acceptability curves. Regarding feasibility, we have already recruited 8 nursing homes; all 4 organizations we invited agreed to participate, with 1 to 3 homes. They indicated the proposed Namaste Care Family matched their philosophy of care and priorities how to better involve families. We asked four local shops, and all are willing to donate products. Our team is excellently positioned and equipped to perform the project, each member having carried out successfully similar large projects, and 2 experts performing the analyses. Regarding sustainability, any resources such as supplies lists and an instructional video will be translated or developed, and improved for an accessible toolkit for further implementation. We will train “champion” families and volunteers to become trainers themselves. Mediation, moderation, and cost effectiveness analyses allow for informed limiting of the future intervention to the most cost-effective elements for patient subgroups (e.g, those with apathy), and activities planning (e.g., if touch approaches were most effective).