Anyone caring for a loved one with dementia knows that it affects their thinking, behaviour and ability to perform daily tasks. While there’s currently no cure or proven prevention for the most common forms of dementia, there is increasing evidence that social health plays a vital role in helping people with dementia to live well and stay healthy.
Research published by the University of Exeter in 2018 found psychological factors, such as optimism, self-esteem and whether dementia patients encountered loneliness and depression, were closely linked to quality of life and wellbeing in these people. Other research shows that person-centred activities combined with just one hour a week of social interaction can improve the quality of life and reduce agitation for people with dementia living in care homes, while another study published by the University College London found that being more socially active in your 50s and 60s is associated with a lower risk of developing dementia in later life.
Professor Yun-Hee Jeon, program director of StepUp for Dementia Research, says that being healthy isn’t just about being fit and disease-free, but rather physical, mental and social factors interacting with each other. Similarly, social health isn’t purely about being socially engaged or active, but also a person’s capability to adapt and adjust to their disabling conditions – such as dementia. It’s about navigating the balance between opportunities and limitations and an individual’s capacity to fulfil their potential and their ability to manage their life with a degree of independence.
Jeon works in dementia care and has been focusing more on how social health benefits the lives of people living with dementia. She’s also been assessing how a dementia patient’s home, community and broader society plays a role in their social health and found that there’s six main factors that need to be considered when it comes to social health. The first is that dementia patients should be treated as individuals and someone who is unique.
“That’s very important. When someone is treated that way, that’s part of a good life and being able to have this optimistic view and being healthy,” Jeon explains.
People with dementia also need to be in control, have a sense of belonging, contribute to their society and engage with others. Jeon adds: “Remaining social doesn’t mean going out to dinner with some people or going to picnics. That’s part of the picture, but being social actually comes with a whole lot of other packages and that actually makes up a good life.”
For example, if a person has arthritis, it may impact their ability to walk, cook or do housework, but it doesn’t mean that person can’t have a good life and there are other things they can still do which enhance their life. It’s the same for people with dementia and the network of people around that individual can make all the difference in how that person feels.
“When you’re surrounded by people who appreciate you, treat you as a unique individual and allow you to be in control and interact with each other, all these things actually make people feel psychologically healthy and have a good life,” Jeon says. “Not everyone belongs to a big group of people but what I see, even if there’s just one or two people around you, when you have meaningful relationships, it makes such a big difference.”
And while medication may play a role in managing dementia symptoms, it’s also important for carers and clinicians to focus on the abilities that person still has, what they enjoy, their strengths and abilities as a way of improving their health and wellbeing. As part of her latest research, Jeon has been working with families and clinicians to understand the importance of empowering people with dementia – another important aspect of them staying socially healthy. By focusing on what matters to that person and understanding what they want and value most, it allows for better care when their condition worsens and they can no longer articulate the things they want.
“It’s not just us as clinicians going into someone’s house and giving out medication. It’s about understanding the person and the person’s environment and so on,” Jeon explains.
Another way to help dementia patients stay socially healthy is to allow them to be as independent as possible. While it can be easy to do everything for them such as feeding them or making their bed, it can take away their independence and ability to do things for themselves.
“What I can see from my studies so far is that it’s really important to understand that having a sense of independence and having a sense of purpose and being able to contribute doesn’t always mean it’s in a big way. All these things actually make up our social engagement,” Jeon says.
Her research is one of many on offer through StepUp for Dementia Research – an Australian-first engagement service that connects participants to studies that have the potential to help those living with dementia have a better quality of life, change the way the disease is diagnosed and discover new treatments and possible cures. The online, postal and telephone service is similar to the concept of a dating service and connects people who are interested in volunteering for dementia research with researchers recruiting for their studies.
Both dementia patients and people without dementia are required for the various studies and signing up is as simple as answering a few simple questions such as your location, date of birth and medical history to determine which study you could be put forward for.