What would our lives be like if we could no longer depend on our most cherished friendships? The people who know us best, who have been there through our ups and downs, and share a history with us?
For many people living with dementia, this is a reality. Over 500,000 Canadians are currently living with dementia, and a diagnosis often leads to a loss of friendships and social opportunities.
The reactions of friends greatly affect the experience of someone living with dementia. When friends distance themselves because they don’t know what to say or presume they no longer know how to interact with their friend, a person with dementia can experience feelings of isolation and loneliness.
When people living with dementia can depend on their friends, they continue to enjoy meaningful leisure activities, experience feelings of joy and self-worth, and see themselves as valued members of their social circles.
Our research had us interview friends together, asking them to share tips and strategies for navigating dementia. We heard moving stories of deepened bonds of friendship, genuine acceptance and the joy of simply being together.
Adapting to changes
Our research allowed us to speak with people who shared a 70-year friendship and couldn’t imagine life without each other. We learned that for some, a neighbourhood walk together was an opportunity to say a quick hello and how a weekly trip to the pub enabled some friends to connect and re-connect in a familiar space.
People living with dementia and their friends may adapt to changes brought about by the diagnosis in several ways. For example, they may prioritize their friendship by setting aside time for regular phone calls and visits. They may alter the way they think about the friendship by being accepting of the changes. They may also use practical strategies, like providing reminders for plans, and offering additional support when spending time together.
Friends of individuals living with dementia may seek ways to continue enjoying meaningful time together. Sometimes this involves identifying activities that are comfortable and familiar. It may also involve providing direction and encouragement to support the continuation of enjoyable experiences, such as visiting a favourite restaurant.
For some, additional comfort may come from hanging out as a group because there is extra support available if needed.
Open and honest communication
Open and honest communication is key to maintaining any friendship and becomes particularly important following a diagnosis of dementia. Yet, that may be the biggest challenge.
Below are some questions that friends might find helpful to ask over a cup of coffee, on a walk or in a quiet, shared moment:
- What do you value about our friendship? Can I tell you what our friendship means to me?
- What is one thing I do that makes you laugh? Here’s something you do that makes me laugh…
- How can we make sure we maintain our friendship (i.e., talk on the phone, over the internet, go for coffee)? How often do you want to connect? How do we need to change our time together? What can stay the same?
- How can we support each other to continue enjoying the leisure activities that are meaningful to us?
- What are the best times and days to plan activities (i.e., morning, afternoon, weekday, weekend)? Are there exceptions?
- Do we need to schedule something in advance (need time to prepare, or get more rest the day before) or can we be spontaneous?
- Where do you feel safe and able to be yourself?
- When we are in public and you need me to step in for you, how will I know? What is “our” signal?
- What do I do if I notice you’re starting to make decisions that are not like you?
- Can I ask you these same questions in a few weeks?
The need for friendship does not diminish with age and friendships continue to deeply enrich our lives.
Given that a dementia diagnosis often puts individuals at an increased risk of social isolation, we must pay careful attention to understanding ways to ensure that friends remain engaged with their networks in personal and meaningful ways.
The first step is to trust in the friendship and begin to explore how it can be sustained over time.
Colleen Whyte receives funding from Social Sciences and Humanities Research Council.
Darla Fortune receives funding from SSHRC.
Rebecca Genoe receives funding from SSHRC.