Friday May 31, 2019

Dementia Reimagined

Dr. Tia Powell directs the Center for Bioethics for Montefiore Health System and Albert Einstein College of Medicine.  She is a national expert on dementia, and for full disclosure, she is a dear friend. So, it is with enormous joy that I share with you a conversation I had with Tia about her recently published book Dementia Reimagined.

For anyone who wants to learn more about dementia and for anyone who is caring for someone with dementia, Tia’s book will expand and deepen your understanding of this group of conditions. As the subtitle of the book implies, it will also help you put dementia in the same sentence as dignity and joy – two essential elements of life that vanish too often and too quickly when someone is diagnosed with dementia.

1.

1. What is dementia? Is it a mental illness? Dementia is a brain illness, and so are mental disorders like anxiety, depression, and schizophrenia. Dementia is actually a group of illnesses, including Alzheimer’s Disease–all of which include memory impairment. All forms of dementia result from harmful changes in the nerve cells and other components of the brain. Of course, depression, schizophrenia, and all serious mental illnesses are also the result of harmful changes to the brain. Those changes are influenced by genetic factors, environmental factors, or often a combination. Indeed, scientists are currently working on the complex interplay between illnesses like depression and dementia; it’s not yet clear if one is a risk factor for the other or if they both share common neurological changes.

2.

2. Is there a cure or prevention for dementia? Sadly, there is no cure. [The book looks in detail at the history of dementia, highlighting the work of an extraordinary African American physician-scientist, Solomon Carter Fuller, at the start of the 20th century. His work was largely ignored but predicts recent advances in understanding how dementia develops. We might be farther along if we’d kept his work in mind!] Today you will sometimes hear about a cure, but those claims are not backed up by trustworthy scientific data. The FDA has recently sent warning letters to a number of supplement manufacturers to stop making unproven claims. Some interventions may help slow dementia’s onset. The best evidence supports fitness – many major studies show that physical activity helps delay cognitive decline. It’s not a guarantee, but it does seem to help. A healthy diet with lots of fruits and vegetables, social interaction, and “exercising” your brain in various ways are all good for our health and good for our brains, but the scientific evidence for these strategies is less definitive.

 

3.

3. So is there at least treatment for dementia? Yes, here there is some good news. We do not have a cure, but we do have interventions that support and comfort those with dementia and those who care for them. We have come a long way from the dark days when it was considered appropriate to just tie a person with dementia to a chair and claim this was done for her safety. There are now good scholars researching what helps those with dementia. For example, the ability to enjoy music lasts well into dementia. The Music and Memory program, brain child of Dan Cohen, creates playlists for nursing home residents. Not only does hearing music create joy, it can also help decrease reliance on potentially harmful anti-psychotic medicines to calm those with agitation–this is a big deal. We do need to make evidence-based approaches more widely available, and we need to make sure those good practices are taken up by all who care for people with dementia.

 

4.

4. The subtitle of your book suggests that dignity is frequently lost when individuals are diagnosed with dementia and that it needs to be reclaimed. Could you elaborate on this? There is a very encouraging trend to include those with dementia in setting policies and practices that affect them. An example is the shift in attitudes toward sexual activity for those with dementia. The old approach was that this was always bad and something to be prevented. The newer approach is that those with dementia are adults who have rights to express themselves in basic human ways. Though it is important to protect those who are vulnerable, a more nuanced and specific approach is appropriate regarding sexual activity, including in nursing homes.

 

5.

5. In 1979, the film, La Vita e Bella (Life is Beautiful) offended many people who could not condone the film’s use of humor to tell a story about a Jewish family that mostly takes place in a concentration camp during the Holocaust. I know you have been challenged by some people for the assertion in your book that there are ways to find joy in dementia. Why are people taken aback and why do you think this is so important? Every life should contain joy, so what is surprising to me is that people are shocked when I say people with dementia should know joy, too. Why should people living with dementia be the exception to the rule? I am not saying it is easy to find. What I am saying is that if we don’t consider the possibility and don’t even look, we are certainly less likely to find any joy. Since we don’t have any cure, many more of us will join the nearly 6 million people with dementia. So, we better get busy figuring out how life with dementia can include joy. It is important for the individuals living with dementia as well as for their loved ones.

 

Tia’s book is scholarly yet readable. It is also highly personal. Her grandmother and mother both lived with and died from dementia. Dementia Reimagined helps all of us understand better the history and research on the group of disorders. It helps us understand the complex interplay of biology and environment in putting us at risk for dementia. Most of all, Dementia Reimagined opens our hearts and minds to what it means to live with dignity and joy while also living with dementia.