Alzheimer's # 3 in a series . . . .
This is the third blog entry reporting on information from the Meeting of the Minds conference on dementia in March, 2015, presented by the Mayo Clinic together with the MN-ND chapter of the Alzheimer's Association. The prior blog entries included much science and clinical information; in this entry, let me try to bring some useful information in a personal way. Some of this information applies more to the person with memory loss of the Alzheimer's type; some of the information is for those who are caregivers – and sometimes the ideas apply equally to both sides of the clinical discussion.
One of the keynote speakers at the conference was Dr John Ziesel, author of the book “I'm Still Here.”
In our communities there is a common view of dementia as a condition of despair, there is a stigma, and there is fear and frustration. And dementia care is expensive for the healthcare industry and for the family care partners who manage at home. Frequently caregiving by the family in the home leads to profound fatigue and burnout. . . the results of which are anxiety, aggression, and ultimately apathy.
Dr Ziesel would like us, as a society, to turn that around. He says that all of us can make a difference with an attitude of hope. His “hope model” is YCMAD, as in You Can Make A Difference. This involves being present with the one with dementia, learn to 'live in the moment.' Do not let sadness dominate your life. See the person (with dementia) for who he/she is! It adds appropriate quality of life to engage in those activities what do not involve memory, such as eating out, going to a museum or art gallery, going to a movie. Your loved one may not recall the details of the event, but the feelings experienced in these outings reduce anxiety and enhance quality of life for everyone.
Embrace hope and don't worry if one cannot always remember someone's name! Memory does not define us. Do you know that our brains have some hard-wired skills including facial expressions (a smile means more than a name), appreciation of nature, navigating by landmarks instead of street signs, and the reassurance of human touch (and I must add the touch of pets, in addition to human contact).
When one is struggling to recall something or someone, let's begin implementing the “phone a friend” concept of cue-ing from someone, as in 'beam me up, Scotty!' Yes, our brains are naturally curious, and prone to wander for all of us. Keeping mementos around are important for the emotional nourishment of remembering a feeling, if not the details or name of the particular item.
We learn proceduraly, such as things that have a sequence of steps, such as playing a card game, playing golf, driving, cursive handwriting. With dementia comes the diminishment of the attention span, which makes these procedural activities frustrating and sometimes impossible. This is why museum visits and art gallery programs are meaningful, and about a one-hour attention span is often someone's limit. One with dementia may not remember the exact event afterwards, but she/he will remember the good feelings of the day.
Let us not ignore some difficulties of caring for someone with Alzheimer's dementia. There is often loss of impulse control. It is best to re-direct the person, rather than confronting with a strong “no!” When behavior becomes challenging, bear in mind that needing to go to the bathroom may be cause for aggressive behavior, when the words to express the need are gone. There are many resources available to assist care partners in coping with someone with dementia at home; let me know if you need assistance in locating these resources.
It is helpful to maintain one's own health and the physical health of one with dementia. Fresh air and exercise benefit all of us. Additional ways to remain healthy including eating well, sleeping well, getting some exercise, meditation, and decreasing stress. Enlisting assistance and partnering in the caregiving journey should involve the healthcare provider networks, family and friends, and other resources that are available.
In no way am I trying to minimize the demands of caregiving or the effects of Alzheimer's dementia. I would refer the reader back to previous blog entries to consider other aspects of the disease. There are stages of this disease, and often different caregiving approaches are successful in one stage but not another.
Dr Ziesel describes the 'emotional learning' that happens when one chooses hope in the face of Alzheimer's disease. Emotional learning leads to a kinder world, emotional openness, allowing one to take care of him/herself, keeping a sense of humor, maintaining patience, and the gift of a Zen mind – all of which lead us all to a state of grace.