Sometimes it’s best I borrow from an author’s biographical information. Such is the case with Dr. Deborah A. Forrest:
“Deborah Forrest was born in Maryville, Tennessee to older parents. Her early years were shaped by an extended family of white-headed elders who were fond of imparting choice words of wisdom gleaned from their own lives in the late 19th and early 20th centuries. For twenty-four years Deborah worked as a Registered Nurse and a biomedical laser researcher. In 1995 she completed her doctoral degree in clinical health psychology and began working in the fields of aging and spirituality. In 2002 her ground-breaking book "Symphony of Spirits: Encounters with the Spiritual Dimensions of Alzheimer's” became an international best seller. Her newly released book "Touch the Spirit: Connecting to the Inner World of Dementia" details many new ways to open a window into the memory banks of a person with dementia. She moves beyond discussions about dementia of the Alzheimer's type to include stories of persons with dementias created by other conditions like Pick's disease, Fronto-temporal lobe disease, Lewy Bodies disease, Vascular disease/Strokes, Parkinson's disease, Huntington disease, Traumatic Brain injuries/Shaken Brain Syndrome/CTE, HIV/AIDS, "Chemo-brain", Open-Heart Surgery induced dementia and Sports-Related brain injuries.”
“Touch the Spirit” is a very straightforward book written for people like me who never sought nor attained a medical degree, yet either want or need to know about Alzheimer’s. The writing is clear, to the point, easy to understand, and sometimes even appropriately humorous. Though the book thoroughly covers Alzheimer’s, it also contains advice for caregivers (the unsung heroes) and family members; realistic advice, not pie in the sky perfect world suggestions. Deborah shares with readers that it’s okay to cry – we don’t have to stay strong twenty-four hours a day, and fear, tension and guilt can sometimes be relieved with a little “retail therapy,” aka – shopping. And chocolate; never underestimate the power of chocolate.
Though I opted to add a touch of lightness to a dark subject, that really is one of Deborah’s points; that it’s okay not to dwell in the darkness cast by Alzheimer’s. “Touch the Spirit” is a marvelous book, covering every aspect of a condition we all know the name of, but still may not know much about until it’s too late and one of our loved ones is diagnosed with it. Whether the reader seeks information, knowledge, assistance, or hope, “Touch the Spirit” is a book we should all read, if not for ourselves, then for those we love.
Q) Can we become overprotective to the point of inhibiting progress, and how do we know when we are?
A) Yes, it is possible to be overprotective IF the person who has been diagnosed with a dementia condition is aware of his/her problems with memory loss, poor judgment and/or behavioral changes. Talk with the person about your concerns and work together to help the person with dementia maintain as much independence and sense of self-control as is possible. IF the person has been diagnosed with a progressive neurodegenerative dementia e.g. Alzheimer’s disease or Lewy body disease then added protection is probably warranted. Many of these individuals have no awareness that they are having any problems with memory loss. They will deny that they have any problems at all. In every case of dementia, work with your medical professionals to determine what level of care is warranted now and what may be required in the future.
Q) Many like to believe they can and will care for their loved ones to the end. Sometimes that just isn’t possible. When should a person surrender that the condition has become more than they can handle?
A) There are many different situations that might trigger the need to make such a decision. The more common ones will be (1) the caregiver’s own health is in decline and she/he can no longer deliver the care that is needed (2) the level of care that is required for the person with dementia is beyond the caregiver’s ability to deliver it. Two or more people are required to help the caregiver perform activities of daily living for the person with dementia. (3) the person with dementia begins to display aggressive behaviors toward the caregiver (4) the person with dementia does not sleep for three or more days and becomes psychotic and agitated (5) the person with dementia develops repeated episodes of fevers, urinary tract infections and/or pneumonia that require ongoing hospitalizations with medical supervision. In all cases where surrendering dementia care to others is warranted, the decision to make this change needs to be made by the caregiver and her/his family members together.
Q) What sparked your interest in helping people to cope with dementia?
A) A number of years ago, I sustained a traumatic brain injury during a motor vehicle accident. It produced many symptoms like those experienced by people with dementia. As I began to study these symptoms, I came to realize that I had personal and academic knowledge and skills to share with dementia caregivers and many of those who are living with a traumatic brain injury and/or shaken brain syndrome. Over the years, I have collected stories from family members and caregivers about the challenges and successes of caring for a person with dementia. Many of them allowed me to share their stories. Eventually, I realized that helping people learn how to cope with the challenges of dementia was the most important thing I could do.
Q) There are hundreds of thousands of cases of people under 65 afflicted with dementia. What signs should we watch for in, as an extreme example, children?
A) In adults who develop dementia, the initial signs center around such things as short-term memory loss, repeated episodes of confusion, or getting lost while driving. The concern about the long-term cognitive problems and memory issues in children is associated more often with sports-related concussions that occur during games like football and soccer. The link between repeated concussions in children and adults is complex. Research in this area is relatively new. These researchers do emphasize the importance of giving a traumatic brain injury time to heal. A Center for Sports Concussion Research and Service opened in May 2012. It is funded by grants from the National Institutes of Health (NIH) and NFL Charities. For information about concussion testing in children visit www.concussion.psu.edu .
Q) How can art, a visual medium, stimulate an open channel of contact?
A) As a health care professional, my immediate thoughts go to the special cells in the eyes that carry nerve impulses of images and colors to the occipital lobe in the back of the brain. The shorter answer is that art can stimulate the visual center of the brain where memories of things seen in the past are stored. Viewing works of art can stimulate long lost memories in a person with dementia. In some cases, an emotional response on the face of the person with dementia can be seen. In a growing number of senior centers around the globe, people with dementia are using various art mediums such as watercolors, acrylic paints and oil paints to express themselves non-verbally with colors and images. Many of these budding artists are shocked and pleased to see their own creations and to learn they have a talent for art they never realized they had.
A) Humor can be a valuable tool to use with persons who have dementia. “Humor Therapy” helps them with their communication skills, their memory processes and their recognition of family members. Don’t be afraid to use it where you can. Finally, researchers have discovered that dancing is clearly the best method we have for preventing dementia of the Alzheimer’s type.
DA Kentner is an award-winning author www.kevad.net