Just as we described the idea of ‘meeting people where they are’ earlier in this module – understanding that every participant comes with unique abilities, personalities and histories, we have also learned that friends and family arrive in our programs with a variety of experiences and comfort levels in the perception of their loved one by others. We work to adjust our approach to friends and family to suit their needs as well, with an aim to support their experiences in sharing the time together in what may be a brand new activity. For some this is easy, and for some it is not. Here are a few examples of how we have worked to support friends and family.
What We Saw:
In an early program, we worked with a participant named Steven who had experienced significant changes in his abilities, particularly evident during the hands-on activities. He had been a painter earlier in his life, with a great deal of skill in creating representational works. During the program, he was able to use a paintbrush with gentle prompting, but his work consisted of very simple shapes and areas of colour in sections of his paper. On many occasions we observed that his spouse was having difficulty with his abilities in the moment. At times she would take the brush from him to choose the colours, and would sometimes paint for him. She was concerned that he was taking too long, and that he ‘wasn’t doing it right’ or keeping up with the demonstration. She seemed embarrassed or sad about the changes her husband was experiencing, and apologized for him to the facilitator on several occasions.
What We did:
In this program, Steven was content to work on his painting or to let his partner paint for him, but our hope was to increase his engagement in activities by encouraging him to paint himself. Our challenge was to support his wife in understanding the goal of the program and in feeling comfortable with the process and results in whatever form they took. We used three strategies – validation, modelling and individual reassurance.
VALIDATION: As with all of our participants, we provide regular, personalized, and authentic comments about their successes. This could be as simple as commenting on the colours he chose, or that we liked some aspect of his work. Validating each participant’s actions and contributions helps both the participant and their friend or family feel better about their experiences. We aim to put everyone at ease.
MODELLING: Throughout a program we modelled positive feedback, and supportive techniques for the friends and family to offer assistance for their loved ones that still maintained independence and choice for the participant as they worked. This could be simple prompts, questions, or gentle assistance.
INDIVIDUAL REASSURANCE: While these two strategies are often helpful in making an uncomfortable friend or family member feel better, there are times where we must also be more direct. At the end of the program, when there was an opportunity for a private moment, the facilitator would chat with Steven’s wife about her feelings and offer suggestions. These conversations included reminders about the goals of the program – enjoying the experience rather than focusing on the results; highlighting the successes that we saw – that Steven was making independent choices and taking pleasure in his work and suggesting other ways she could help rather than doing the work for him. We also left space for her to share her feelings and concerns, and reassured her that the participation we saw from her partner was good, and that we saw success.
REDIRECTION: One way to reinforce the shared experience between participants and loved ones is to encourage both to participate fully. In this case, this meant giving Steven’s wife her own canvas and paints, and encouraging her to make an artwork of her own, rather than to support and supervise Steven’s work. By having her own work to complete, it refocused her attention, kept her busy and by default switched her approach to demonstrating on her work rather than taking over his. They shared the experience together, and she had a positive result for herself as well.
In the end, we saw improvements, but the issues were not completely resolved. Understandably, families carry a great deal of emotion with them as they watch their loved one progress through the stages of dementia, and we can only do our best to support them.