Post-stroke lives in Dutch nursing homes: Recognizing interrelated problems and expressed agency towards optimizing supportive care

This thesis aims to formulate key elements for optimizing supportive care for persons who live post-stroke lives in nursing homes (NHs). Within the entire chain of stroke care this is still under researched, while it concerns 11% - 15% of stroke survivors. In the Netherlands, this group of NH-residents is mostly residing on somatic wards. In order to identify the problems that they have across multiple domains of functioning, we performed a cross-sectional, observational study among 274 residents in 17 Dutch NHs (58% female; mean age 77 years; median time post-stroke almost 4 years). It revealed very high prevalence of problems on the physical, cognitive, emotional, communicative and social domains of functioning. Within this range of impairments, this thesis stresses the importance of further optimizing the relief of pain and the reduction of apathetic behavior. The multidisciplinary guideline “Recognizing and treatment of chronic pain in vulnerable elderly” respectively the multidisciplinary care program “Act in case of depression, with attention to apathy” provide a solid basis for this. A future tailor-made care program for post-stroke NH-lives should pay special attention to the structural recognition and management of (1) stroke-specific pain syndromes that can evolve over time, and of comorbid emotional distress (especially symptoms of depression, anxiety, agitation/aggression, and delusions); (2) apathetic symptoms in especially stroke residents with (moderate or severe) cognitive impairment and very severe ADL-dependency, which also can evolve over time; and (3) fatigue, with the potential to improve the analysis of both pain and apathy as multidimensional problems as well. In order to identify what support this group of NH-residents need to live their everyday lives, seen from their own perspectives, we performed a qualitative interview study among a purposive selection of 13 residents from the quantitative study population. We identified “agency” – i.e. the possibility of acting based on intention – as central theme in the interviews. It reflects residents’ focus on their own active role to give shape to their NH-lives, rather than a direct focus on what support they need. The results describe how residents express agency in the domains of spending daytime (related to a private-, social-, or outdoor-based sense of home) and the formal care-relationship (asking for help, holding on to a familiar and friendly interaction, or holding on to rules and routines). A future care program should promote a basic approach of recognizing and acknowledging individualized ways in which residents actively try to gain a sense of home within the NH-environment, and to feel secure and equal in the formal care-relationship. For residents with cognitive and/or communicative impairments this will require a specific approach. It would confirm residents’ competence as active autonomous agents and would enable a shared exploration with residents and relatives on what support would be fruitful and possible (or not). A care program should also guide the recognition of residents who do not express agency in everyday life. Specialized caregivers should invest in the further understanding of these residents’ amotivation. Finally, we performed a systematic literature review in order to identify factors in the first month post-stroke that have a predictive value for institutionalization and/or severe disability. We concluded the evidence to be insufficient for the development of a clinical prediction tool that is better than clinical outcome predictions by physicians. Towards an optimal start of supportive NH-care on the continuum of stroke care, future research should enable a reliable prognostication of long-term NH-care in the early post-stroke (geriatric) rehabilitation period after hospitalization. In addition, we should further our understanding how an early start of a supportive NH-care approach can best be integrated into geriatric rehabilitation.