Research Stream: Social Lives
Authors: Maria Gialama, PhD scholar and Graduate Teaching Assistant at Maynooth University’s Department of Psychology, Joanne McVeigh, Assistant Professor of Psychology, Maynooth University, Mac MacLachlan, Professor of Psychology & Social Inclusion, and Co-Director of the ALL Institute, Maynooth University and Georgios Hadjigeorgiou, Professor of Neurology, Medical School, University of Cyprus.
Dementia is an extremely common, progressive neurodegenerative condition which affects almost 55 million people worldwide. Every year, almost 10 million new cases are reported (WHO, 2024). Today, dementia is the seventh leading cause of death and a major cause of disability and dependency among the elderly. Unsurprisingly, the World Health Organization (WHO, 2019), declared dementia a public health priority, not only because of its global prevalence, but also due to its significant impact on families and health service providers. In Ireland, there are 55,000 ‘people living with dementia’ (PwD) and almost 60,000 people who provide care for someone diagnosed with the condition. Long before COVID-19, dementia emerged as a pandemic due to ageing populations and the relationship between age and the incidence of the condition (Fox & Petersen, 2013).
PwD may experience cognitive impairment (e.g. difficulties in memory, thinking, communicating) which is often accompanied, and sometimes preceded, by changes in mood, behavior, emotional control or motivation. A wide range of ‘Behavioral and Psychological Disturbances in Dementia’ (BPDD) may occur such as depression, agitation, aggression, anxiety, apathy, delusions/hallucinations and sleep impairment. The vast majority of PwD will report many of these symptoms over the course of their illness and these can negatively affect their mood, wellbeing and social engagement, whilst also leading to disease progression and increased hospitalisations. Although dementia affects each person differently, it has been found that as the disease progresses, PwD will eventually require more intense treatment and care. Indeed, WHO (2024) identified the detection and treatment of these challenging BPDD as one of the principal goals for dementia care.
Enhancing Treatment and Care – The Role of Lifestyle Medicine
As yet, there is no known way to cure or treat dementia; numerous pharmacological therapies currently used for the treatment of the BPDD, such as ‘psychotropic drugs’ (PDs), raise concerns regarding their efficacy and safety due to the substantial evidence of their risks, severe side effects, and long-term inefficacy (Schneider et al., 2006, Van Der Spek et al.,2016). Interestingly, a recent study by Delgado et al. (2021) showed that PwD were 83-103% more likely to have a recorded ‘potentially inappropriate prescribing’ (PIP) than individuals of similar age and gender without dementia, establishing an association between PIP and an increased risk of adverse health outcomes for PwD. Considering the implication of lifestyle factors, researchers are increasingly exploring evidence-based nonpharmacological approaches/lifestyle interventions to support PwD to “live well” and to improve their mood and wellbeing, whilst providing opportunities for meaningful engagement in activities which promote socialization and creativity.
For example, Jaqua et al. (2023) provided evidence that the six pillars of ‘lifestyle medicine’ (LM), namely, plant-based nutrition, physical activity, stress management, social connectedness, avoidance of risky substances and restorative sleep, can lead to improvements in the neurocognitive decline of PwD. Contrary to conventional medicine that mainly focuses on medicines and medical procedures, lifestyle medicine employs evidence, based on therapeutic lifestyle interventions (such as behavioral strategies) as a primary modality to enhance and maintain optimal health and to prevent, treat and reverse chronic diseases across the lifespan. In so doing, LM intends to support people in making and sustaining necessary changes to their lifestyle to optimize their health by educating them about the need to replace unhealthy behaviours with healthy ones.
Accordingly, Livingston et al. (2020) provided the best available evidence on what could be done in preventions and interventions for dementia, identifying twelve modifiable risk factors that might prevent or delay up to 40% of dementias worldwide, including physical activity, social contact and depression management; suggesting that being cognitively, physically, and socially active in midlife and later life could protect against dementia. Thus, post diagnostic care should be addressing not only the physical but also the mental and social health of those with the condition, and their families.
An increase in general interest in the area of lifestyle factors and changes that could possibly hinder disease progression and improve wellbeing and quality of life (QoL) was demonstrated in one of the latest CNN’s documentaries, where Cici Zerbe, reported that her Alzheimer’s symptoms have been reversed as a result of participating in a clinical trial that included a plant-based diet, regular exercise, group support, and yoga or meditation. With accumulative evidence suggesting the effectiveness of lifestyle interventions, the question that logically arises is whether multicomponent interventions, including a combination of these lifestyle factors, such as physical activity, social connection and stress management/emotional regulation paired with education could help PwD and those who provide care for them to live better, leading to joint improvements in their physical, mental and social health and overall wellbeing.
The MYND Programme for Dementia
Inspired and motivated by such promising findings, researchers at Maynooth University in collaboration with the University of Cyprus, developed “The Mind your Next Dance” (MYND) programme for dementia using a multimethod, multidisciplinary and inclusive approach combining the knowledge, experience and skills of international researchers, academics, allied health professionals and practitioners with the lived experience of those affected by dementia, as well as their caregivers, to design a programme that would reflect the real world needs of all parties involved in dementia treatment and care and make helpful suggestions for tangible enhancements in this area. This programme is based on a combination of dance movement psychotherapy (namely the therapeutic use of dance) and mindfulness with a view to improving mood and wellbeing whilst also promoting meaningful social engagement and enjoyment.
Notably, this innovative research represents an attempt to move away from traditional biomedical approaches in the field of dementia, to person-centred, psychosocial approaches which put PwD at the centre of their care, while promoting lifestyle changes such as group exercise/dance and practicing mindfulness, thereby providing opportunities for social connectedness. These approaches are based on the notion that the personhood of PwD needs to be replenished, evoked and reassured. Often, a diagnosis of dementia leads to deficit-based thinking, emphasising what PwD can no longer do. However, it can also be viewed in a positive light, encouraging PwD to exercise their remaining skills and abilities and remain actively engaged in activities they like.
Dancing and dance movement therapy (DMT) have been found to work effectively to boost happiness and improve mood and well-being by simultaneously stimulating different areas of the brain (e.g. musical, kinesthetic, rational and emotional). Specifically, DMT is an embodied psychological therapy which uses movement, music and dance to express/explore emotions and improve memory, self-esteem, reality orientation and anxiety. It can also help to address social isolation and promote social integration.
Accordingly, therapies that employ mindfulness -the conscious awareness of the present moment- are called mindfulness-based interventions (MBIs). MBIs are structured programmes; – therapeutic approaches currently utilised to introduce mindfulness skills through breathing awareness, body scanning, guided imagery, yoga etc. MBIs involving PwD, have led to improvements in working and logical memory, verbal fluency, attention, sleep and mood as well as increasing QoL, reducing depressive symptoms and changing the spontaneous activity of the hippocampus (i.e., the brain region which is found to be associated with dementia) (Anderson et al.,2017).
The MYND findings indicate that to increase the chances of nonpharmacological programme implementation and sustainability and maximise their impact, education/psychoeducation should be provided to PwD, their families, care providers and societies to challenge the existing misconceptions and enhance understanding of what PwD can do to improve their health and QoL. Importantly, such programmes encompass rights-based approaches that empower PwD giving them a sense of agency and control over their health and thus, should be complementing traditional therapies, comprising an integral part of post diagnostic dementia treatment and care plans. To make this possible, they need to be personalised to meet diverse and changing dementia needs and adaptable to different contexts. Also, they should be offered at low/no cost, be easily accessible, built on the principles of equity and equality.
Ensuring a human rights-based approach for dementia treatment and care is particularly important in light of this year’s World Health Day theme “my health, my right” emphasizing that everyone is entitled to access quality health services, education and information and PwD should not be excluded from these rights. Indeed, integrated, and holistic quality dementia treatment and care can be provided through simple yet effective/cost-effective and sustainable lifestyle interventions that address the needs of PwD, their care providers and the communities they live in.
