by Carolyn Lukert, MBA, CGCM,
PAC Consultant and Mentor
Dear PAC Consultant,
My uncle has dementia and is becoming harder and harder to engage. I am finding it difficult to visit because, quite honestly, I don’t know what to do when I am with him. I know that I am not alone, as other family members have expressed the same thing. As a result, he has very few visitors, and I am sure he is both bored and sad. I feel so bad about this. Can you help?
Distressed in Denver
Thanks so much for reaching out. Engaging people living with dementia can most certainly become more difficult as time goes on – for many reasons. Brains are changing, which means abilities are changing, and finding ways to be successful can really be a challenge. The unfortunate result is exactly what you are experiencing - people stop visiting, and that is distressing for all involved, isn’t it?
You didn’t mention where your uncle resides – in a residence with family and/or care partners, or in a structured community (like an assisted living or more supportive environment.) In any case, my response would pertain to either and anything in between.
First, understanding what your uncle is able to do – what is his current level of ability, how are his sensory systems working, and how does that contribute to his ability to connect and contribute? You might wonder how you get this information – perhaps asking care staff and/or other family members would be a good start, but you likely have a much better sense of who to ask in your particular situation.
Before dementia was in the picture, what were his interests? Did he have hobbies that could be drawn upon, or special topics that he really enjoyed exploring? If so, how might you use what you know about him – past and present – to come up with something he would really enjoy?
And, now that he has dementia, for how long is he able to stay interested and engaged? Depending on where he is in his dementia experience (his GEMS® State, in our PAC frame of reference), his ability to remain engaged on a particular topic could range from minutes to hours, so having an idea of that could be helpful in your planning.
Ultimately, the idea would be to provide yourself and other potential visitors with ideas for things they can do with your uncle, and make it easy for them to connect. For your uncle, having regular visitors that know how to interact and engage with him could impact his quality of life in a big way. So, what can you do to move things in this direction? First, finding out for yourself, and then perhaps communicating with others in a way that is effective for them – a good, old-fashioned handwritten note, or an email, or something else.
A few quick, general tips:
- How long should visits be? While there is no universal answer, a pleasant short visit trumps a distressing long visit any day.
- What should we do on a visit? Try bringing something to do, show, or hold. This of course depends on what your loved one is able to do successfully. Whether it’s playing cards – perhaps Go Fish or War (as opposed to a complicated game like Bridge,) or looking at pictures, or maybe even bringing in a pet (if your uncle enjoys dogs, for example,) thinking about something he has a good chance of enjoying based on what you know about him. Depending on his ability to move around, going for a walk (under his own power, or with an assistive device, might also be an option.)
- How should you transition out of a visit when you are ready to go? This is an important consideration as you don’t want to leave your loved one in a state of distress. So, perhaps checking in with those that are around him help manage the transition. Sometimes even timing a visit so that the visit “end” is right before a meal or other pre-set activity can make for a successful exit.
I hope this gave you some ideas to think about regarding visiting your uncle, and supporting others to visit, as well. As always, we are happy to help explore strategies related specifically to your situation with a phone consultation, so please do not hesitate to schedule one. You can find more information on our consulting offerings by visiting our phone consultation page.