Dementia is becoming an increasingly significant issue as our population ages and finding better ways for people with dementia to live well is important. Participation in meaningful activities is promoted as one approach that can improve quality of life of people living with dementia. I’m sure we can all agree that it’s important for everyone, including older adults and people with dementia, to participate in activities that we find meaningful.
When I reflect, my interest in meaningful activity began before I started my research in this area. My great-grandma moved into a residential aged care facility (RACF) at the age of 100. She spent those days sitting quietly, watching the comings and goings of the facility staff and visitors. Nanna was always happy to see us, but she really struggled with living in the RACF. All these years later I can still vividly remember her telling us she just wished she could peel a potato again. What was it about peeling potatoes that was so important to her? This is what first sparked my interest in meaningful activities and lead me to undertake my PhD research in this area.
What did I do?
‘Meaningful activity’ is a concept that is often talked about but what we mean when we use that term was unclear. The main aim of my PhD study was to understand meaningful activity in the context of the lives of people with dementia in residential aged care facilities. I talked to residents with dementia, their family members and facility staff to explore their perspectives on a few questions:
- What are the key characteristics of meaningful activity for people living with dementia in residential aged care facilities?
- What circumstances or environments enable or prevent participation in meaningful activity?
- What impact does participating in meaningful activity have on the lives of residents with dementia?
Four residential aged care facilities participated in the study. Across these facilities, nineteen residents, seventeen family members and fifteen staff participated.
What makes activities meaningful?
Based on the perspectives of the people I talked to in my research, activities that are considered meaningful for people living with dementia in RACFs have six key features: enjoyable; suited to the person; engaging; goal-related; linked to identity; and social. Thinking about these six features helps us reflect on common activity opportunities for RACF residents and consider other opportunities that may help residents experience meaning.
Enjoyment was seen as one of the most important aspects of meaningful activities. Many of the participants talked about the difficulties and sadness often experienced by residents because of needing to move into care and experiencing declining health. In this context, activities are an essential break from this and a much-needed opportunity for enjoyment. One family member talked about reassuring their relative that “enjoying it in the moment…that’s what matters”.
Suited to the person
It was unanimously agreed that there is no single activity or list of activities that are meaningful activities. Activities that are considered meaningful are different for each person and need to suit that persons’ interests and abilities. Many residents were aware of how physical and cognitive impairments have limited or changed their participation in activities. As abilities change, residents’ activity interests and the way they can participate may also change. Having activities that suit their abilities and the appropriate support from others allows residents to participate in activities despite any impairments they may have.
An interesting example to think about here is residents spending time watching the TV, which is often frowned upon. This may be fair if people are sitting in front of the TV merely to occupy time and aren’t interested in what they’re watching or don’t have the cognitive abilities to understand or follow it. One family member, I talked to, shared about her Mum’s experience watching movies. She said, “She won’t be able to understand it, she can’t follow it so there isn’t that meaning to it.” However, if the person is watching a film or program they are particularly interested in and can follow, it may have meaning to them.
To be considered meaningful, activities also need to engage the person. When we think of someone being engaged in an activity, we often think of someone actively participating. While it can mean that, the staff and family members I talked to also valued someone watching or showing interest in an activity. If they feel they have “captured their mind to watch” an activity, then that activity can be classed as meaningful for that person. Some of the signs that can show more passive engagement include looking towards an activity that others are more actively participating in or tapping their foot to music that is being played. These types of passive engagement are likely to be especially relevant for people with more severe impairments.
Being able to achieve a goal or have a purpose through activity participation helps to bring meaning to the activity. There are many different goals for participating in activities. The most common goals associated with meaningful activities were caring for or helping others and contributing to the maintenance or running of the RACF. For example, activities that involved residents interacting with children, caring for animals, supporting people in need in the RACF or the wider community and household tasks. For others, activities that involve making something tangible or keeping the mind active allow them to achieve goals of being productive or healthy.
Linked to identity
Activities that are meaningful to a person allow them to express an aspect of their identity. They do not have to be the same activities that the resident found meaningful in the past, but they are often linked to past activities or the person’s usual personality in some way. One participant shared the story of a resident who used to work on fishing boats. While he’s not able to go out fishing anymore, he finds meaning in reading fishing books and watching fishing shows on TV.
In most cases, activities needed to have a social aspect to be seen as meaningful. Participants shared stories of residents enjoying activities in the social context but then not having an interest in participating in the same activity on their own. One example was of a resident who would listen to music with other residents in the living room but then didn’t want to listen to music when in her own room.
It’s important to note that this doesn’t simply mean participating in the organised large group activities at the RACF. Activities can also have a social element by participating in a small group, one-on-one interactions or even participating in an activity alone but in the presence of others. These ways of including a social element to activities were seen as particularly important for residents whose personality may not suit larger groups or interactions or who have more severe cognitive or communication impairments that make social interactions difficult. The social aspect of meaningful activities helps residents feel a sense of community, to meet and connect with other residents and staff or even just to know that they are not alone.
So, ‘meaningful activities’ are different for each person as they are suited to the person’s unique physical and cognitive abilities as well as their interests. To be meaningful, activities also need to be engaging, enjoyable, related to a goal that is important for that person, linked to their identity or past and have a social aspect. Understanding the key characteristics of meaningful activities can help us reflect on the activities that residents are already participating in and consider new opportunities for activities that may give residents a sense of meaning.
With what I now know about meaningful activity, I reflect back on my Nanna’s experience. Would peeling potatoes have been a meaningful activity for my Nanna? I think it could have been. As long as she was supported to get there and able to do it sitting down at a table she would have had the physical abilities to participate. She would have been actively participating so engaged in the activity and I can imagine her enjoying it in the moment. My Nanna had prepared meals for her family and friends for 90 years and was known for her hospitality so continuing to prepare food would definitely have helped her express that aspect of her long-held identity and do something purposeful, caring for others. The activity could easily be done in a social context, either people preparing food alongside each other or interacting at the same time.
Why is this important?
Supporting residents living with dementia to participate in these kinds of activities has the potential to greatly improve their wellbeing and quality of life. Participants in my study talked about the importance of meaningful activities as they help residents to adjust to life in the RACF with a sense of normality, purpose and enjoyment. In addition to giving the person something to do, it is important that activity participation is used to facilitate a sense of purpose and identity and address social needs. As I talked to residents about their meaningful activities, they were eager to share their experiences with me and their faces lit up as they told me about the activities that were meaningful to them.
I want to finish with a quote from one of my study participants that wonderfully sums up the power of meaningful activities in people’s lives and reminds us why it is so important to support RACF residents with dementia to participate in these kinds of activities. As one resident put it, participating in an activity that was meaningful to her helped her feel:
“You’re still part of the world, not just existing”
Dr Laura Tierney undertook this study as part of her PhD through Queensland University of Technology and was funded by an Australian Government Research Training Program scholarship. She was supported by her supervisors: Prof Elizabeth Beattie, Dr Elaine Fielding, Dr Kathleen Doherty and Dr Margaret MacAndrew. Laura now works as a Research Fellow at the University of Tasmania (Laura.Tierney@utas.edu.au).