Having the Conversation

The doctor told me that, “Dementia is the cause for the changes we have all noticed.”

These are sobering words are ones that elicit conversation between loved-ones. The location could be an office where a counselor facilitates productive discussion. Or perhaps the best place is an informal one where coffee and cake creates an atmosphere of comfort and connectedness. 

It’s hard to know where to begin. Some find it easiest let the conversation gradually drift from the weather to the emotional and practical aspects of dementia. Others prefer having the help of counselor to guide productive exchange. 

People in the early stages of dementia may be the one who initiates discussion. He or she may start by addressing their fears of what they face as well as their distress of becoming a burden. He or she may have words to say about choosing the person who they hope will oversee their care as well as express the desire that dementia does not create ill-will between family members. 

His or her thoughts about end-of-life care are another important topic. Here listening maybe more important than discussion. Listen to what he or she has to say about advance directives, comfort (palliative) care and hospice--the last stage of palliative care. 

Conversation among-loved-ones will undoubtedly include more immediate wishes such as enjoying time together, taking bucket-list adventures, and the challenge of the “things I have always wanted to do” list. This is the time to create memories. 

Sometimes families and same-sex couple and their families do not have the luxury of beginning conversation with a diagnosis of early-stage dementia. When this is the case, your loved-one may still have the capability to listen and perhaps make comments. Be sure to acknowledge his or her presence and, as much as is possible, engage them in the discussion.

Speaking with and among loved-ones is an ongoing process. Events occur that require reassessment. Family dynamics may have deteriorated and should be addressed before they worsen. It may be time to talk about the conflicts between personal views about death and dying and your loved-one’s advance directives. Or perhaps reassessment involves orchestrating a family gathering or a final adventure.

Janet Yagoda Shagam, PhD, is a freelance medical and science writer and the author of “An Unintended Journey: A Caregiver's Guide to Dementia.” Available through Amazon.

The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse nor guarantee products, comments, suggestions, links, or other forms of content contained within blog posts- that have been provided to us with permission, or otherwise. Dementia Society does not provide medical advice, please consult your doctor. www.DementiaSociety.org