February 6, 2010

CANADA: Dementia - How to help those cursed with living only in the moment for the rest of their lives

. VANCOUVER, British Columbia / The Vancouver Sun /Life / Opinion / February 6, 2010 Two books explain how to care for people with dementia, which includes remembering that the person has not stopped being a human being By Douglas Todd, Vancouver Sun When I hear people say that learning to "be in the moment" will solve all their problems, I often think about my mother. My mother lives in the moment. And it is terrible. My 83-year-old mother has severe dementia, probably Alzheimer's disease. It affects more than 4.5 million North Americans. Late-stage dementia robs people of their Self, of the collection of past memories that makes them who they are -- or were. The diminished Self of those with intense dementia poses an incredible challenge for loved ones, including the growing number of caregivers who want to include a spiritual component in their support, which is the topic I'll get to shortly. Maybe I'm oversimplifying the proposition of living "in the moment," but the plight of people with dementia makes it clear to me it is not healthy to try to be absolutely "in the now," as so many popular spiritual teachers currently preach. I agree that people can become too obsessively morose about their troubled past or too anxious about their uncertain future, so there is clearly some value in putting some emphasis on being "mindful" of the present. But it's not a panacea. Even though some of the world's most accomplished meditators, most of them from the East, have philosophically categorized the past and future as "illusions," they must have had a working sense of both. Otherwise, if these high-level contemplatives were so "in the now" that they actually lost awareness of their past and future, they would be like people with Alzheimer's disease. Dementia curses people to live exclusively in the present. For humans to live fully, they need to heed the wisdom of the great 19th century Danish Christian existentialist, Soren Kierkegaard. He believed it's worthwhile to be aware of the present. Nevertheless, he stressed, "Life is lived forward, but understood backwards." To understand who we are, philosophically and psychologically, we must hold all three realities -past, present and future -- in balance. Which brings us to the dilemma of caring for people with Alzheimer's and other dementias. What can caregivers do for people who have virtually no memory of the past and no sense of the future? A person in the later stages of dementia has lost a great deal of who they are. Their quality of life has been hacked back, catastrophically. We would be kidding ourselves to pretend otherwise. People with severe dementia have, in many senses, lost much of their personhood, their way of finding meaning and belonging. This is a tragedy of profound proportions. It leads many loved ones, including myself at times, to a sense of futility. Why bother doing very much for the family member with severe dementia if he or she is barely even "there?" This the kind of question that many authors and researchers are taking on these days, especially with the numbers of people with Alzheimer's expected to grow dramatically in the future, as people live longer. Studies show 25 per cent of people over age 85 have Alzheimer's disease. Two books that explore how to bring a sacred aspect to caring for people with dementia are Spiritual Caregiving, edited by Verna Benner Carson and Dr. Harold Koenig, and Spiritual Care for Persons with Dementia, edited by Larry VandeCreek. Although painfully aware of the devastation wrought by dementia on one's sense of personhood, the writers in these books don't believe the brain-damaged person has stopped being a human being. While acknowledging that people with Alzheimer's experience a reduced sense of Self, these researchers have found that caregivers should not try to counteract it by encouraging people with dementia to "orient to reality." In other words, Alzheimer's patients who say they want to talk to their mothers don't need to be reminded their parent died 40 years earlier. Or, when they say they want to go "home," they don't need to be told they've been living in the nursing facility for five years. "Rather than constantly correcting the person and confronting them with their memory losses, it is better to validate their experiences and 'go with the flow.' A religious or spiritual interaction is more positive if there are few reminders of losses," says Spiritual Care for Persons with Dementia. This jarring truth is hard to accept. The idea that a firm dose of reality does not help people with dementia has deep existential implications. It's an admission that those with dementia have, indeed, entered an unreal world, without past or future. Aside from such existential issues, however, one thing researchers recommend is that it's always beneficial for caregivers to show unconditional positive regard for those with dementia. This, to me, is a spiritual stance, which is available to religious and non-religious people alike. Thankfully, it seems to be the attitude adopted by most people whose jobs it is to care for my mother in her nursing home. As far as I can tell, many of these dedicated caregivers are devoutly religious. In practical terms, showing unconditional positive regard for people with dementia usually means connecting with them on basic physical and emotional levels. Oftentimes, when a man or woman with dementia is confused or making no sense, a hug is by far the best thing a caregiver can offer. My mom wasn't a hugger for most of her life, for example, but she sure loves hugging now. Another thing that people who write about spiritual care for people with dementia recommend is helping them access buried spiritual memories by reciting a prayer they once knew, singing a beloved sacred song or reading one of their favourite passages from the Bible, Koran or a Buddhist sutra. Since my mom has been a lifelong atheist, these suggestions aren't directly relevant. Even in her healthy days up until around age 70, she did not find meaning through religion. But there are others things I can do for her, which could be broadly defined as spiritual. I can play some music, light a candle, help her sing a favourite song, tell stories from her life (without insisting she remember them), read a passage from a book and get her involved in a physical activity, the latter of which seems to give her more enjoyment than anything. Perhaps best of all, however, I can stay in a good mood when I'm with my mother. It's not always easy, since the sense of loss is so painful. But, like most people with dementia, my mother quickly picks up on and reflects my emotional state. Since my mother's own Self is so fragmented, she adopts the emotions of whomever is with her, especially if it is someone with whom she may possibly, unconsciously, remember is her son. When people are doomed to live only in the moment, and unable to create meaning by facing reality -which requires awareness of the past, present and future -all they have left is what and who is immediately in front of them. Even within that limited existence, however, they can experience care and love. [rc] Douglas Todd E-Mail: dtodd@vancouversun.com Read Douglas Todd's blog at www.vancouversun.com/blogs © Copyright (c) The Vancouver Sun