Person-centred care involves including people with dementia in supportive social networks.

People with dementia have the same needs as those of us who are not living with a dementia illness for inclusion and social connectedness.  A sense of belonging makes us feel valued, respected, and loved.  In the same way, feeling excluded can make any of us – dementia or no dementia - feel rejected, abandoned and hurt..

Nathan's story

We had a resident, Gary, with a mild dementia who was very depressed, anxious, and had low self-esteem. He was very isolated and would remain in his room all day, even for meals.  

I spent time getting to know Gary and gaining his trust.  

Then I worked together with Gary to write up the story of his life and I helped him to present it to his family and to the staff.  

He gained confidence to interact with others more and to join in with some of our activities.

What do we see in Nathan's story?
  • Nathan recognised the importance of making Gary feel included.
  • Nathan showed respect by getting to know Gary. 
  • Nathan weclomed and involved people who were important to Gary, his family.
  • By sharing Gary's life story with staff, Nathan helped to create an atmosphere where Gary felt wanted and accepted.
  • Gary recognised and responded to Gary's anxieties to help find ways to make his social interactions comfortable for him.
  • Gary and Nathan worked together on a shared task that helped Gary to be active and involved, and helped Nathan to form a connection.
  • Nathan looked to see how he could help Gary have wider relationships and interactions.
Thinking about the social environment

Dawn Brooker and Isabelle Latham (2006) emphasise that one of the keys to person centred care is providing a social environment that supports psychological needs.  This provides a useful basis for thinking socially supportive networks .

Here's their big idea: 

  • Our lives are grounded in relationships, but people living with dementia need extra support to help compensate for their impairments and foster opportunities for social connection. 
  • Our interactions with other people help shape and strengthen our sense of our own self, our personhood. There is a Zulu saying that "A person is a person through others".  When a person's sense of who they are and how they feel about themselves is shaky because of the changes that their dementia has brought, then it is extra important that we provide extra support for positive interactions and relationships.
Let's think about a situation like Gary's where the person is anxious and feeling bad about themselves and has become isolated. (Brooker & Latham, 2016; Dementia Care Central 2021; Griswald, 2019)
Tip 1: Think of social interaction as part of the care plan
  • Social interaction is like exercise for the brain. Social interaction gives the person opportunities to keep using their cognitive abilities regularly — it might be using their their memory to share stories, using the language centres of their brains, or keeping paying attention. 
  • Being socially connected may help slow cogntive decline.
  • Social interaction also lets people maintain the kinds of social relationships that help them feel like they are connected and belong, and reduce loneliness.
  • This can also have significant benefits. For example a large scale study in the UK found that when aged residential care staff were trained in person centred care and with the aim of an hour of deliberate social interaction each week, the resident's wellbeing increased and signs of distress decreased (Ballard et al, 2018). What's more other research suggests that people who are social engaged rather than lonely tend to be less anxious, have higher self esteem, eat better,  sleep better, and even exercise more as well!
Tip 2: Help the person feel a part of what is going on around them
  • We all like to be involved, especially if it's about us!
  • We want help people feel included and attached to others.
  • We can encourage people to take part in social networks, even if it's in small ways. 
  • A first simple step might be to think about where they are spending time. Can we help them physically move to somewhere that they can see others?
  • We might be to think about the person's conversations. Do people only talk to them about about care and symptoms? Nathan's story provides a great example of getting to know key stories in Gary's life that could help prompt conversations.
  • We might think about how they are spending their time - are they active in things that fulfil them every day? We can look for ways to involve the person that make give them a sense of purpose and inclusion.
Tip 3: Recognise it can feel hard for the person
  • There are aspects of the way dementia affects people that may make it more difficult to connect with others even when a person really wants to.  Things like impairments in language, understanding social cues and following the polite rules of society,  planning, or motivation for example.  
  • Anxiety is more common for people living with dementia. When someone feels anxious, especially about their social skills or how people might react to them, they are less keen to be social. They may actually dread having to socialise with other people. We saw this with Gary who felt anxious about their social abilities and bad about himself.
  • It is important that you consider the feelings of the person you are supporting as you also encourage socialization. 
  • We want to make it as easy as possible  to be with people. As care partners, we have a special role to help people bridge the gaps that dementia can cause so that their efforts can be more successful, and the person can feel more confident.
  • Building one relationship, with Nathan, acted as a bridge for Gary to form a better connection with other people.  Isn’t that often the way?  When we make a new friend or welcome a new person into our family, we get to know their friends and family as well.  Connections lead to more connections, whereas isolation leads to more isolation.
  • You make great practice for feeling like social interactions are manageable. If you are positive and upbeat it help create the vibe! You can think about your facial expressions and tone of voice, to show that you enjoy their company. The message you are giving is that they are a person worth spending time with.
  • Remember that the part of the brain that helps us understand language is different than the part that helps us to speak. So the fact that someone may struggle to talk in a conversation doesn't mean that they don't understand what being said. Even when a person has severe dementia they can still respond to the intention of connecting and warmth in people's voices.
  • If you have ever gone through a time where you felt cut off and disconnected from others, how did this affect you?  How would other people have noticed that things were not right in your world?  Is there anything to learn from your experience that can help you recognise the signs of social isolation and exclusion for people with dementia that you work with?.
 
Tip 4: Try to make opportunties
  • Like many thing, a bit of planning can be help make that regular social engagement happen.
  • For many peole, especially men, doing things side by side together is a less anxiety provoking way to socially engage than a situation that is all about 'making conversation'
  • Think about scheduling in activities that will help the person engage together with you, or with others. You might have some resources to help the conversation along - a life story book, or some potatoes to peel.
  • You might have thought of some some conversation starters, like favourite meals of gardening to talk about while peeling the potatoes 
  • Get to know the best time of the day. For example some people living with dementia may be tired or unsettled later in the day.
  • Getting to know the person will help open up ideas. We are all mor psoitive about getting up and socialising if it's around something that we love or are intersted in.
  • Look for ways to involve the people that are important to the person. We saw this with Gary and his family. Sometimes family or other visitors may appreciate your gentle help for ideas for ways to engage and what to expect (for example letting then know about Gary's life story book, or perhaps his precious tomato plant that he is growing).
  • Family care-giving can be really rewarding, but it can also be stressful and sad. We can welcome and support the time families spend engaging with the person, while trying not to make judgements or put pressure on them to be more, or less, involved.
  • Sometimes going places can help provide a sense of community and being involved in ordinary life, whether it's a cafe, library, or supermarket. Sometimes these places might be brought to the person in some way.
Would you like to find out more about encouraging social engagement?
  • You can watch a 1 hr mini conference webinar by the engAGED National Resource Center in the US here
  • You can visit the conquering loneliness in New Zealand website here
  • You can remind youself of the role of connecting with others as one of the five pillar of wellbeing for yourself, as well as the people you support here.