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Apathy in people living in nursing homes is common and related to adverse outcomes on functional independence, cognitive functioning, quality of live and mortality. In people with dementia apathy is described as reduced or diminished interest, interest and emotional expression. Previous research and interventions have focused on challenging behavior in general, and agitation and aggression in particular. This leaves those with apathy at risk of being overlooked.
Researcher(s) Hanneke Nijsten and co-authors studied the experiences of people with apathy and dementia, their family caregivers and professional caregivers to understand how they identify and managed apathy in nursing homes.
The research group, led by Debby Gerritsen from the department of Primary and Community Care, in collaboration with the Radboud Alzheimer Centre published the results in BMC geriatric on 9 November 2023.
A descriptive qualitative study with purposively sampling was employed, in which they used interviews with people with apathy and dementia, family caregivers and professional caregivers and focus group discussions with professional caregivers. Additional interviews were held after signals of increasing apathy during the first Covid-19 lockdown.
Using an inductive approach, the data was analyzed thematically to explore experiences of the different stakeholders regarding the identification and management of apathy in people living in nursing homes. All stakeholders experienced that appraising signals of apathy was challenging, as it required perceiving loss of emotions and behavior, knowing the context was important, and apathy was considered part of the dementia. Apathy negatively influenced the wellbeing of people with dementia, as well as the wellbeing of their family caregivers and professional caregivers. People with apathy and dementia had difficulty reflecting on their experiences and internal state. Family caregivers and professional caregivers experienced apathy as challenging when it reduced the wellbeing of the person with dementia, or when, they themselves experienced ambiguity, frustration, insecurity, disappointment and avoidance in the contact with the person with apathy. Family and professional caregivers could successfully manage apathy when they applied specific strategies such as stimulating meaningful contact, adjusting expectations and appreciating little successes.
The results of this study, were combined with a theory for developing interventions (intervention mapping) and a framework on complex interventions (of the British Medical Council), to provide a starting point for the development of an intervention. This intervention to identify and manage apathy in nursing homes is called Shared Action for Breaking through Apathy (SABA). More information on the materials and procedures of SABA can be found on: www.ukonnetwerk.nl/tools/saba. The results of the development and feasibility evaluation of the SABA program were recently published in Aging and Mental Health.
They hope to look back on this one day as a great first step towards raising awareness and improving the identification and care for people with apathy living in nursing homes.
Read the study here
Nijsten, J. M. H., Smalbrugge, M., Plouvier, A. O. A., Koopmans, R. T. C. M., Leontjevas, R., & Gerritsen, D. L. (2023). Identifying and managing apathy in people with dementia living in nursing homes: a qualitative study. BMC geriatrics, 23(1), 727. https://doi.org/10.1186/s12877-023-04422-y
Read the study on the SABA intervention here
Nijsten, J. M. H., Plouvier, A. O. A., Smalbrugge, M., Koopmans, R. T. C. M., Leontjevas, R., & Gerritsen, D. L. (2023). The development and feasibility evaluation of a program to identify and manage apathy in people with dementia: the SABA program. Aging & mental health, 1–11. Advance online publication. https://doi.org/10.1080/13607863.2023.2228252
