As we learned in Module 2, there are many changes in ability that will occur progressively for participants in your programs. For some, these changes are already apparent when you first meet them, and for others, these changes can take place over the course of the program. Each person’s comfort in adjusting to and accepting the changes will be different, as will their awareness of the changes over time. Much of what we have already discussed will help you to be sensitive and supportive to the changes and the participants’ perceptions of themselves.
Friends or family members who attend with a participant can act as a loving and supportive partner in the program. They do this by appreciating the contributions of the participant in whatever form they take, and by leaving space for them to communicate and take part in activities in their own way. They can provide gentle assistance when and if it is needed, and they can participate in the program as well, enjoying the process together.
It is important to understand and in some cases manage the expectations and comfort of the friend or family member. They will remember what their friend or loved one was like at an earlier stage in their life. They will know how much their abilities have changed, and carry a variety of feelings about those changes, even when the participant may not be bothered by or aware of the changes.
Here we can refer back to the idea of stigma that was covered in Module 1. Stigma is not just about carrying negative attitudes about people who have been diagnosed with dementia, it is also present in the feeling that others may feel for the people with dementia in their lives. For some these feelings are very present, and for others they can be unconscious. They may include embarrassment, worry or fear, frustration, uncertainty, or a strong need to ‘help’. Stigma can sometimes lead to isolation, as others may be too worried to take their loved one to public places or programs. Programs like Artful Moments are very beneficial to help everyone see the participant as capable, creative and welcomed. Friends and family members may experience negative feelings because they feel badly for the changes the participant is experiencing – they may not be able to communicate or perform as they once did. They may also worry about what others think of the person they love and want to compensate, or to improve their ‘performance’. To help the friends and family overcome their discomfort or their overactive need to ‘help’, we must make sure to reinforce the goals of the program, teach them what success looks like in the context of the program, and model supportive and encouraging strategies to help them. For many, seeing validation or positive feedback for their loved one goes a long way to helping them feel happy or proud as well.