No breakthrough has been made in dementia research to find a cure in the last century (Selkoe, Reference Selkoe2012), but a great deal of progress has been made in the description of pathology. The damage caused by this multifaceted “disease” has been described in terms of its physical, neuropsychological, and social manifestations at an individual level but also its societal impact at large, often in financial terms.
Of course, we need to understand pathology and negative consequences of the disease. Without such understanding, no direction of what to cure or to compensate is possible. Yet, this current focus on what Oliver Sacks calls “defectology” (Sacks, Reference Sacks1985) neglects the remaining capacity of the person with dementia and the possibilities to compensate for the deficits. The remaining capacity can be addressed by the concept of social health. Social health involves making a dynamic balance between opportunities and limitations, affected by external conditions such as social and environmental challenges. Several dimensions can be identified including people's capacity to fulfill their potential and obligations, the ability to manage their life with some degree of independence despite a medical condition, and the ability to participate in social activities including work (Huber et al., Reference Huber2011).
The aim of this guest editorial is to provide an analysis of the concept of social health and to highlight its potential to contribute to living well with and without dementia.
The concept of social health addresses the gap inherent in the WHO definition of health, being “a state of complete physical, mental, and social well-being”. The gap between complete health and the health status of most people with chronic/long-term conditions is that they will not be able to achieve complete well-being. Social health in this regard acknowledges that the person does not have to strike a perfect (complete) chord to reach the status of well-being. Instead, the state of well-being can be achieved as they are able to make adaptations to their limitations and seize opportunities to reclaim some of their abilities, while maintaining a balance between the ability and the disability, in the context of their social, psychological, and physical environments (Huber et al., Reference Huber2011). Not acknowledging the individual's potential can create an additional threat to their capacity to lead a quality life, as powerfully described by an international advocate for dementia at the First WHO Ministerial Conference on Global Action Against Dementia in 2015.
When I was diagnosed with dementia at the age of 49, I was told to get my end of life affairs in order, to give up work, to get acquainted with aged care, and to go home for the time I had left. I term this Prescribed Disengagement, but chose to ignore it and with support from the disability sector, engaged in authentic brain injury rehabilitation and other non-pharmacological and positive psychosocial interventions for dementia, including advocacy (Swaffer, Reference Swaffer2015).
People with dementia not only have to deal with their brain problems but also are further threatened by such “prescribed disengagement” (Swaffer, Reference Swaffer2015).
Social health and dementia research
In dementia research, despite a heavy investment on a biomedical focus, the most promising results have come from epidemiological research, “borrowing” potential risk and protective factors for dementia from cardiovascular research. It has been found that mental, physical, and social factors equally contributed to decrease dementia risk (Karp et al., Reference Karp, Paillard-Borg, Wang, Silverstein, Winblad and Fratiglioni2006). For example, there is a strong connection between dementia and poor social engagement, comparable with other well-established risk factors for dementia, including physical inactivity and low education (Bennett et al., Reference Bennett, Schneider, Tang, Arnold and Wilson2006, Kuiper et al., Reference Kuiper2015). Social pathology is also an important part of dementia diagnostics: the changes in social behavior is one of the most recognizable symptoms of dementia and very burdensome for the family caregivers (Moniz Cook et al., Reference Moniz Cook, Swift, James, Malouf, De Vugt and Verhey2012; Haro et al., Reference Haro2014).
An accumulation of three decades of psychosocial research on dementia care has revealed the power of social engagement, environmental support, and remaining capabilities of the person with dementia. Such development in our understanding of social health challenges the common belief that dementia cannot be prevented and that capabilities of people with dementia cannot be maintained or be improved.
We argue that social health provides an overarching lens through which our endeavors to better health and well-being of people with dementia can be brought into focus, for example, restorative care or reablement (Galik et al., Reference Galik, Resnick, Hammersla and Brightwater2014), individually tailored activities and environmental modifications (Graff et al., Reference Graff, Vernooij-Dassen, Thijssen, Dekker, Hoefnagels and Rikkert2006; Gitlin et al., Reference Gitlin, Winter, Burke, Chernett, Dennis and Hauck2008, Gitlin et al., Reference Gitlin, Winter, Dennis, Hodgson and Hauck2010) and person-centered care (Edvardsson et al., Reference Edvardsson, Winblad and Sandman2008). Social health is an umbrella term that embraces an array of concepts reflecting human capacities to participate in social life such as reciprocity and dignity (Vernooij-Dassen et al., Reference Vernooij-Dassen, Leatherman and Rikkert2011), and resilience (Gaugler et al., Reference Gaugler, Kane and Newcomer2007). More importantly, seeing the person with dementia from the perspective of social health, inescapably leads us to focus on the person's needs (love, comfort, attachment, involvement, identity, and meaningful occupation) and their positive and negative experiences (Kitwood, Reference Kitwood1997).
Thereby, social health goes beyond pathology and relates to normalcy and positiveness, and to wider society including its norms dealing with mental illnesses. Researchers around the globe have made a remarkable progress in demonstrating the importance of emphasis on social health in dementia care and preventing and reducing disengagement.
For example, the Care of Persons with Dementia in their Environments (COPE) program aimed to reduce environmental stressors affecting the capabilities of the person with dementia in their home, while optimizing their capabilities through engaging them in their physical health, daily activities, and supporting caregivers. The COPE program was delivered by occupational therapists and an advanced practice nurse over four months, involving a comprehensive set of assessments (physical, medical, social, relational, and environmental aspects), caregiver education, and training. At four months (n = 107 dyads in the control and 102 dyads in the intervention group), COPE improved the person's instrumental activities of daily living (telephone, shopping, meal preparation, housework, laundry, travel, medicine, managing finances) and their engagement in activities, and caregiver well-being and confidence using activities (Gitlin et al., Reference Gitlin, Winter, Dennis, Hodgson and Hauck2010). Similarly, underpinned by person-centered care principles and the Social Ecological Model, Function-Focused Care (FFC) targeting supporting residents with cognitive impairment in nursing homes, aims to shape and work on the goals aligning with their preferences and capabilities. While addressing intrapersonal, interpersonal, environmental, and policy factors that can affect their well-being, FFC significantly improved the amount and intensity of physical activity and physical function at six months (Galik et al., Reference Galik, Resnick, Hammersla and Brightwater2014). These programs have acknowledged the person's desires and capabilities to fulfill their independence and engage in everyday activities including social. A Danish Alzheimer Intervention Study (DAISY) of a multifaceted intervention, designed to optimize capabilities of the person with dementia including semi-tailored counseling, education and support, also demonstrated positive outcomes in depression scores for people with dementia and in quality of life of their caregivers (Waldorff et al., Reference Waldorff2012). The semi-tailored design of the DAISY was a distinctive feature of the program as it involved a combination of individualized and structured approaches to care. Furthermore, new initiatives to prevent and reduce disengagement are taken on a societal level such as dementia-friendly communities try to stimulate social participation for instance by educating and training staff working in supermarkets and banks (Alzheimer's Disease International, 2012).
The results of those interventions focusing on social health are gradually contributing to a turning point in dementia care and policy: the replacement of the disaster scenario with the scenario of living well with dementia. Yet, more needs to be done for a breakthrough in dementia care. Social health should be included in models on causes of dementia as well as in models to reduce its consequences. Social health aspects may contribute to brain reserve and might also be crucial in optimally using the plasticity of the brain (Valenzuela and Sachdev, Reference Valenzuela and Sachdev2006; Fratiglioni and Wang, Reference Fratiglioni and Wang2007). This can be done through active facilitation and utilization of social and environmental resources individuals possess.
Despite growing evidence of the importance of the concept of social health for prevention and management of dementia, which is directly applicable in clinical care and daily life of the person with dementia and their carers, social health is still an underestimated opportunity in the medical community. This paper will help medical readers raise awareness of the importance of social health in dementia and hopefully offer them an avenue to different approaches to their practice: looking beyond a bio-medical model of health.
Social health is a recognizable label that helps researchers, practitioners, and policy-makers communicate with others scientific levels in dementia research. Parallel to efforts to improve adolescent mental health (Lee et al., Reference Lee2014), we advocate for new avenues in dementia research that bridge discoveries in biomedical and social sciences and use the potential of social health to guide novel interventions. We propose social health serves as a new paradigm in dementia research.
Conflict of interest
None.
Acknowledgments
We thank Professor Gert Westert, Radboud University Medical Centre Nijmegen, Professor Frans Verhey, psychiatrist, of the Maastricht University Medical Center, Professor Esme Moniz-Cook, psychologist, of the University of Hull, and Professor Robert T. Woods, psychologist, of Bangor University for reviewing this manuscript and their feedback.
