How to handle unwanted dementia advice

People just want to help, but you have the right to set some boundaries

My dad has dementia. I do my best to care for him but find that when my friends hear my story and they give advice and comments, I feel like some of them are judgmental. Signed, tired of everybody’s advice I don’t know your story, but will take this opportunity to reach out and educate you and your friends about all that free advice, commentary and associated judgments.

I hear caregivers talk about this a lot when they are sharing their stories. Most caregivers, like you, are trying to do the best they can in very challenging and adverse conditions. It is not easy caring for someone with dementia and even less easy when people heap on unwanted advice, criticism or possibly negative comments.

Your role as a caregiver puts you in an interesting place in relation to these “advisers.”

As humans, we make judgments all the time, but some people are more judgmental than others. When we delve into it, the word “judgmental” implies making judgments in an unhelpful way. This is likely not your friends’ intention, but it is clearly coming across that way.

When someone is ill, it is not uncommon for others to share their suggestions and ideas. Some of these you may have sought out and agree with, but others from a “friend/adviser” may make you feel like that person just doesn’t get it when it comes to your dementia scenario.

One reason this often occurs with dementia is that almost everybody knows someone who has been touched by the disease. Dementia is also quite variable in its presentation. It may be different in how specific caregivers are coping, depending on whether the dementia is mild, moderate or in the later stage of the illness. Advice in this area is not “one size fits all!”

Remember, the people who advise you may indeed have some good tips to share, but sometimes it derives from their own need to share their story or their own caregiving journey. This of course, can be of help, and is a strategy used in Alzheimer’s support groups; but again, it depends how this advice is shared.

To the adviser, I always suggest: Ask first. Does the other person actually want your input? Just because you have gone through caregiving doesn’t mean that others are in an emotional place to hear your wisdom. Just listening is often helpful. Caregivers often comment that a supportive ear is the most helpful gift from friends. Ask first if there is something that you can share, having been a caregiver yourself.

But we all know someone who won’t be able to omit sharing their “two cents’ worth.”

One technique is to show gratitude for their desire to help, while setting a limit. For example, say: “I really appreciate the information, but right now I am not ready for this.” That may be enough to stave off unwanted advice. If that doesn’t work, be more forthright, by stating: “I have a lot of input now and feel I can’t take in any more. I may come back to you when I am ready.” As a caregiver, you have the right to do what feels right and you can try to do this in a polite — and if necessary, not-so-polite — way.

If a friend says something you feel is offensive or not appropriate, a good reply is: “I know you are only trying to help, but I need to figure out what will work for me.”

Remember, a lot of people need to hear that they are being helpful and doing well. Reinforce the adviser that he/she did a great job, but now it is your turn. This is not easy to do when the emotion of the moment, the fatigue of caregiving or the frustration of never “getting it right” is still raw. I have heard many caregivers snap, get annoyed or even break into an argument. Take a deep breath and step away if you can. If this is somebody in your social circle, try to reach out when they are not in advising mode and pre-empt them by explaining that you prefer not to discuss this topic for now.

Part of being a caregiver is managing all the information coming at you. Having a professional to rely on will surely help make you feel more confident to set your boundaries with others. Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health Sciences Centre and in private practice. She is co-author of Dementia A Caregiver’s Guide available at www.baycrest.org/dacg Email questions to caregivingwithnira@baycrest.org