GPS Shoes Track Dementia Patients
Dementia Caregivers: How to Build Meaningful Relationships in Spite of Memory Loss
BLOGGER: Michael B. Friedman, LMSW and John Zeisel, Ph.D.
Being the caregiver for someone you love who is gradually losing mental capacities is about as tough as it gets in human life outside of wars, disasters and profound poverty. Parents who were once your source of nurturing and knowledge; who worked hard to take care of their family; who had interests in politics, religion, sports, movies, celebrities and more; who had fun with their friends; who may have been among the best in their field. Parents who lose their mastery and become unable to manage their own affairs or to care for themselves in the most basic ways — parents who become dependent on you to take care of these things for them — can be, and often are, a source of great sadness.
Spouses and lovers who were your soul mates, your partners in life, the people with whom you shared your most important, moving, pleasurable and challenging moments — spouses who gradually lose their capacity to be with you as companions and confidantes can also be a source of great sadness.
On top of this, the time, energy and resources that it takes to be the primary caregiver for these people who are so important to you, can sap your own strength. You can feel that it is more than you can stand.
Changing your expectations of the person with declining cognitive capacities can make a big difference, helping you to be less frustrated and irritated by his or her inability to do what they once could and especially to be with you in the way they once were.
Focusing less on the past and on a wished-for future can make it possible to connect emotionally in a new way and to get the most out of the moments you have together. Our relationships are often oriented toward a collective future: retiring together, traveling together, getting old together. It can be daunting to maintain a relationship that does not have the kind of future we always assumed it would. But it is not impossible to have relationships in the moment that are emotionally satisfying even if we are terribly sad about what they, and we together, have lost.
Understanding that the person we love is still there, despite their inability to access memories without help, can also make a difference. Reminiscing together — even if it is mostly one-sided — can be a gratifying experience, especially when the person’s eyes light up with recognition. Talking about and engaging in old interests, listening to favorite music, going to a baseball game or even getting the feel of it on TV, watching old movies, taking a walk in the old neighborhood — all these can be sources of satisfaction in the moment. Even if the explicit memory of these experiences slips away because of the complex ways in which dementia affects the brain, the emotional connections remain.
Discovering the possibility of being together in silence can be deeply moving and meaningful as well. When we put aside our dashed dreams long enough to be open to the rich emotions alive in that silence, just being together can release an unspoken emotional exchange.
But what about the really difficult times? Dad has wandered away again. Is he safe? Mom says she doesn’t recognize you and yells for the police when you visit. Your wife curses you for cheating on her. Your husband demands sex with the home health aide. Your friend seems lost in himself and does not respond to your presence at all. What can you do?
There is no magic wand guaranteed to make bad times go away. Even if by changing our own behavior we reduce their anxiety and agitation, sometimes the people we care about remain disengaged. Some people’s disappointments and angers run so deep that moments of peaceful, loving exchange seem impossible. Some of us who are caregivers can’t stand another minute.
But these terrible times do not beset all people all the time, not by a long shot. It may seem impossible for the person you care about to get meaningful satisfaction out of a life so different from the life she or he lived before cognitive decline. It may seem impossible to have a meaningful and satisfying relationship with a parent, a spouse, a partner or a friend with whom you can no longer have in-depth conversations. It may seem that they cannot possibly find life worth living.
But a great many can. People with significant cognitive limits can get satisfaction out of life, and it is possible for us to have meaningful relationships with them — if we learn to shift what we want and expect from them, see the person who is still inside, and develop the capacity to live in the emotional moment.
(Michael Friedman is Adjunct Associate Professor at Columbia University’s schools of social work and public health. John Zeisel, Ph.D., who is Founder and President of The I’m Still Here Foundation and of Hearthstone Alzheimer Care.)
[1] Sanders, S and Swails,P. “A Quest for Meaning: Hospice Social Workers and patients with End-Stage Dementia” in Social Work Vol 56, Number 2, April 2011. http://oberon.naswpressonline.org/vl=5971918/cl=20/nw=1/rpsv/cw/nasw/00378046/v56n2/s4/p129
[2] Zeisel, John. I’m Still Here: A New Philosophy of Alzheimer’s Care. Avery. 2010.
BLOGGER: Michael B. Friedman, LMSW
After a person has been diagnosed with Alzheimer’s disease or other dementia, subsequent emotional, mental, cognitive, and behavioral problems are usually blamed on the disease. Other possible reasons including behavioral disorders such as depression, anxiety, or substance abuse or ordinary human reactions to tough realities are very often ignored.
“Grandma seems terribly sad.”
“ Of course, she has Alzheimer’s”
“Grandpa has been nasty lately“.
“It’s the Alzheimer’s.
“ Uncle John doesn’t enjoy life anymore.”
“ Who would? He has dementia.”
“ Mom isn’t eating much or isn’t taking her pills or isn’t getting any exercise.”
“It must be the Alzheimer’s”.
Not necessarily. In fact, blaming dementia very often gets in the way of understanding what is really going on and doing something about it that will help.
If there were a pill that would reverse, stop, or — better yet — cure Alzheimer’s, it might be useful to understand the emotional and behavioral problems of people with dementia solely in terms of the disease. But the best pills available now only delay the unavoidable decline in memory and other cognitive functions. That’s worth doing, of course, for the people for whom the pills work. But counting on the doctor to come up with medicine that will make a big difference usually is disappointing.
People with dementia experience many of the same emotions as people without dementia, but they are at higher risk than older adults without dementia for diagnosable mood and anxiety disorders, both of which can result in declines in cognitive functioning that are similar to the decline associated with dementia.
Unlike dementia, however, depression and anxiety can be treated effectively; and if they are, the loss of cognitive functioning that is caused by these disorders can be reversed. To be clear, treating depression and/or anxiety does not reverse dementia and the loss of cognitive functioning caused by dementia. But effective treatment for mood or anxiety disorders can result in overall improvement of functioning that can make a very big difference in a person’s life.
These days, of course, the first line of response to depression and anxiety is medication. However wise that is for people without dementia, it is unwise for those with dementia. Medication can be helpful, but it can also be dangerous. At the very least, doses must usually be lower than for younger adults.
Better is to begin with interventions that do not rely on medications. Some formal psychotherapies can be helpful, such as “cognitive-behavior” and “interpersonal” therapy. Exercise, interesting activities, and social contact with people they enjoy can also be extremely helpful.
Most important is to understand (1) that people with dementia are adults with meaningful life histories, personal interests, individual desires, and a need for dignity and respect and (2) that behavioral “problems” are to a significant extent in the eye of the beholder. People with greater understanding and tolerance of behavior, that most people find trying, are generally better able to help people with dementia to get the most out of life.
I don’t mean to make this sound easy. Some people with dementia are so profoundly sad and lost in themselves that they may be impossible to reach. Some people are “scared to death” by the slightest change in routine. Some people completely deny that they have any need for help. Some people are abusive towards anyone who tries to help them, evoking responses in kind from many — if not most — of us.
But many people could be helped to overcome emotional problems that co-occur with, but are not caused by, dementia.
In an ideal world everyone with dementia would be able to get a sophisticated assessment to distinguish between the effects of dementia and other disorders and then to get the treatment that would be most likely to be effective. But in the real world there is a terrible shortage of physicians who understand the subtle differences between dementia and depression and other disorders. In the real world there is a terrible shortage of geriatric psychiatrists and other mental health professionals. And in the real world, paid and family caregivers usually do not get training and support to help them be more skillful with and tolerant of the people they care for.
Our nation needs major changes in policy to address these shortfalls. In the meantime, however, we need to understand that there are ordinary emotional causes for the sadness, disengagement, and anger experienced by so many people with dementia and that we caregivers can do much to meet human needs often neglected because of a frightening diagnosis.
Grandma is sad? Grandpa is nasty? Maybe they are clinically depressed and could benefit from treatment. Maybe she’s lonely and he feels he’s being treated like a child. Maybe it’s something else. But be careful not to jump to the conclusion that it’s because of the dementia.
BLOGGER: MICHAEL FRIEDMAN, L.M.S.W
I am afraid of developing dementia, the most common form of which is Alzheimer’s disease. The possibilities are horrifying — the ineluctable loss of memory and other cognitive functions; dependency on others to dress me, to feed me, to change my diapers; slipping into a fog, where I cannot recognize even people I love.
But is dementia inevitably a cruel, distorted end of a human life?
When I was younger, I thought so. I had no doubt that I would prefer death to living in a demented state; that I would want to take my own life; and that, if I missed the timing and could not act on my own, I would want someone else to do it for me. “Just shoot me,” I said to my wife — knowing, of course, that she would not and could not, but hoping that she would act swiftly as my health care proxy to have any kind of life support — including food and water — removed when I was no longer myself.
As I have become old (I am now 68), my thinking has changed. When the time comes, if the time comes, I may want to live — even if I cannot engage in witty conversation; even with the need for someone to help me hobble on a walker to get out for a breath of air; even with the indignity of someone cleaning me after I mess my diapers.
What we expect and want for ourselves changes over time. That is the fundamental insight of developmental psychology. When I was a child, being a child seemed right. When I became a teenager, I fought against being a child. As a grown-up, my adolescence was an embarrassing memory. I am happy now not to be driven to succeed at the work, which largely and happily defined my existence as an adult. The low-stress life I am fortunate to have now feels right to me.
What will feel right when I am very old? Will I care if I can no longer analyze public policy? Will I be deeply distressed if I cannot write or teach? Will I suffer if I cannot tell a joke or have an informed conversation about politics, world events, and the fields of knowledge and activity that have been central to my life?
Or will a visit from someone I like make my day? Will my daughter and grandchildren (if I have them) be a source of constant interest? Will watching world events on the TV with only faint understanding be enough? And when the time comes, if it comes, will the feel of the sun on my face be enough for me to want to live? Will a caring hand on my shoulder, the taste of French fries, the sound of jazz, the sight of a beautiful painting or sunset be enough? I do not know the answer.
I do know that dementia unfolds in stages. Although many people in the early and mid-stages are devastated by the growing loss of important abilities and develop mood or anxiety disorders, others have “full” lives that include the pleasures of friendships, love, and sex; the satisfaction of participation in social and communal activities; and even the discovery of new interests. In fact, some experts on dementia (see, for example, John Zeisel’s book, “I’m Still Here“) maintain that diminished cognitive functions result in the release of capabilities that have been suppressed by the very cognitive abilities that are now in decline — particularly the willingness to take creative risks and the openness to human affection and intimacy.
There are, as we all know, people with dementia who become depressed, frightened or angry — some so angry that they are abusive to people who try to care for them. There are some people with dementia who wonder why they are alive, or wish for death.
But there are also people with dementia who experience pleasure, who feel love, and who are at peace.
So, even though I still fear developing dementia, I no longer say with any sense of certainty, “Just shoot me.”
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BLOGGER: MARY LANGUIRAND, PHD
There are days when it takes all the self control I possess to be with Carol, a pleasant 87 year old woman with mild age-related cognitive loss. I can empathize with the complaints about the kids who don’t visit often enough, the aide who forgets to put her phone within reach, and the salad with the wilted lettuce. However, I sometimes think that if I hear one more repetition of the story about how her husband bought her a cherished emerald ring in 1973, I may tear out my hair. It’s a long story, it never changes, and I believe I’ve heard it at least twice a month for the past three years.
Short-term memory tends to fade with advanced age, as it is based on such factors as ability to attend to the environment, maintain focused concentration, and track complex information. As illness, diminished energy and perceptual changes erode some of those capacities, the ability to recall recent information diminishes. In contrast, memories from years past strengthen, having been reviewed and repeated (and revised and edited) many times. Caregivers often marvel that Mom can’t remember her upcoming doctor’s appointment, but can tell you what she paid for milk in 1964.
You might think that listening to the same story over and over would be a neutral or—at worst—a mildly boring experience. After all, we hear all sorts of things repeatedly—recorded messages on trains and busses, the music in TV jingles, liturgical passages at religious ceremonies—and many people find the familiar tolerable, and even soothing. Why then, do so many caregivers report that hearing yet again about Dad’s heroic actions in the fields of Korea or Mom’s days as a cheerleader can drive them to drink?
Much of the frustration comes from the fact that this sort of repetition is one of the most inescapable “proofs” that someone has reached a point where they are more comfortable in the past than in the here-and-now, and that this isn’t likely to change. The effort of attending to current realities is too much, and they’ve surrendered to the comfort of the familiar. The content of these repeated tales is also rather telling, as it can give some clues to those events and experiences that impacted the person most profoundly: If a parent’s most cherished memory relates to things that happened long before you were born, what does that say about you?
Repetition apparently isn’t limited to the senior set… When emailing a younger colleague recently, I shared a past experience that I thought resonated with some current events, and was quite chagrined when reminded that I’d already told that story. I felt rather hurt that my misplaced effort at empathy (and the chance to recount how I’d saved the day ‘back in the day’) apparently generated boredom and annoyance, along with the message that I’m forgetful. No kidding—I really don’t remember having told that one before…
Once I moved past the hurt feelings, I began to think about getting my act together and scoring some points in the present, instead of resting on past laurels, which is probably a good thing. I also began to develop a new appreciation for Carol’s experience. I thought about my own response to her oft-told story about the emerald ring, and how I regularly discount her need to re-live a time when she felt loved and special. I just hope profoundly that I don’t communicate my impatience as clearly as my colleague did.
I can’t honestly say that the story took on a new glow when I heard it again, but I did realize that maybe Carol shares it with me because our interactions remind her of that time when she felt valued, and appreciated, with years of life yet to be lived and goals yet to be accomplished. Maybe I need to put more effort into helping her to recapture those feelings in her current relationships.
Realize that when someone relates an experience to you you’re hearing about it for a reason. Don’t just hear, listen.
Mary Languirand and Robert Bornstein are the authors of When Someone You Love Needs Nursing Home, Assisted Living, or In Home Care, published by Newmarket Press. The second edition, revised and updated, was recently released. Here’s the link: http://www.newmarketpress.com/title.asp?id=901
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