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Expert: Stephen Post, PhD, Founding Director of The Center for Medical Humanities, Compassionate Care and Bioethics Center in the Renaissance School of Medicine at Stony Brook University

News — When it comes to the most challenging holiday visits with friends and family in recent years, some think of trying to make merry with those whose political views appear opposite our own. Yet all families at some point face an even more difficult type of holiday visit – the one that involves bringing cheer to an elderly family member with dementia, one who may seem “no longer there” in mind despite their physical presence.

Whether it's gathering for Hannukah, Christmas, New Year’s or other holiday celebrations, many American families will celebrate with loved ones who have dementia. The NIH’s Aging, Demographics and Memory Study estimates that about 14 percent of all Americans aged 71 and older experience some form of Alzheimer’s disease or related dementias – that translates to more than 5 million people.

How do you “celebrate” with Uncle Joe who has Alzheimer’s? How do you share a holiday meal as a caregiver with grandma who has another form of dementia? Or what about talking about holiday memories with a spouse who can no longer conjure up those memories?

There is no clear solution to celebrating the season with loved ones who have dementia. But , PhD, a bioethicist who is an expert altruism, happiness, and a pioneer with ethical issues related to those with dementia, has a message that could change your focus when visiting or caregiving for these loved ones during the holidays:

 “There are powerful lucid moments that occur with the deeply forgetful. Hold onto them. It’s worth the time and will give you renewed meaning to your relationship with your loved one.”

Post backs this message with years of documented research that illustrates the emerging lucidity that occurs in those with dementia, or the deeply forgetful, especially in times of gentle caregiving or continued conversation and stimulation from visitors.

For example, in a paper published this year in the , Post and his Stony Brook University colleagues teamed up with the Gallup Poll Organization to survey nearly 6,000 respondents, all who are caregivers of deeply forgetful individuals.

Close to 2,000 of them responded to questions after confirming their loved one had unexpected lucid moments.

The caregivers’ emotional response to these moments of lucidity were overwhelmingly positive with half or more saying it left them feeling grateful, connected and supportive.

Furthermore, Post says don’t assume people who become “deeply forgetful” are no longer “there.” He and colleagues found that for nearly 90 percent of caregivers such experiences have positive meaning – somehow in the breakdown in communication and awareness, “Grandma is still there” and worthy of inclusion in the holiday season.

Sit with an aging aunt with Alzheimer’s on Christmas morning or put some music on for grandpa on New Year’s Day and you may receive an unexpected gift of their lucidity.

Such breakthrough moments have been validated by caregivers, Post says, and he and his co-authors describe what to look for or prompt these special moments:

“Specifically, throughout the illness experience of Alzheimer’s disease and related dementias, such individuals can and do surprisingly come back into themselves as often manifested in some forms of verbal or non-verbal lucidity. These inexplicable moments of lucidity can be stimulated by deeply meaningful music, simply singing to a loved one who has become very deeply forgetful, reading a familiar poem, or connecting them with a familiar object from the past. But these moments can also be entirely spontaneous and unstimulated.”

The encouraging news, Post says, is that a recent national prevalence study also estimates that up to 44 percent of dementia patients experience unexpected lucidity – that’s a golden holiday moment waiting for those who visit the deeply forgetful to bring them cheer.

Brief biography of Stephen Post

https://www.stonybrook.edu/experts/profile/stephen-post

Dr. Stephen Post is an expert in kindness, empathy, compassion and positive psychology. He works around the world educating people that creativity, hope, nature and music can help us make room for those needful people rather than exclude them. His book, Dignity for Deeply Forgetful People, has been recognized widely, along with his 30 years of study on ethical issues related to those with dementia.

He can discuss the topic of lucidity in the deeply forgetful, describe the recent Stony Brook/Gallup Survey, as well as detail other research related to the unexpected and powerful lucid moments of those with Alzheimer’s and related dementias.