Some guidance for family and friends visiting loved ones with dementia
Nataly Rubinstein, a licensed clinical social worker and certified geriatric care manager, addresses a common concern of family members who may live far away from loved ones with Alzheimer’s or other forms of dementia. While they may know about a loved one’s recent diagnosis, family members and friends, who have not recently visited their loved one, may wonder what to expect and how to act, Rubinstein wrote for The Huffington Post. While her guidance concerns holiday gatherings, her advice should be considered as a template for all family members and friends who visit a loved one with dementia. Rubinstein provides six considerations to keep in mind to make the visit an enjoyable experience. Her first consideration tells us to understand why we feel the way you do. For family and friends who are greeting loved ones with dementia during the holidays, Rubinstein said it is OK to feel sad, confused, worried or even frustrated about a family gathering. This time of year is supposed to be “the most wonderful time of the year,” but you may not feel up to it while acknowledging a loved one has dementia. Her second consideration reminds us to manage our expectations. Alzheimer’s is a progressive condition that slowly robs a person of their mental function over a period of years, so while dad, or a favorite aunt, seemed great last year, they may not seem so good this year. Acknowledging the elephant in the room is another consideration offered by Rubinstein. With no known cure, a loved one could die on Christmas, but do not insert the dreadful “what-if” into every conversation. In reality, anyone could die on any given day. Being sympathetic of the needs of the patient and the caregiver is another consideration. Since Alzheimer’s is a progressive disease, family and friends may want to call ahead to learn about the loved one’s current status and understand how their needs have changed. For the fifth consideration, Rubinstein suggests that family and friends should learn some basic knowledge about the stages of Alzheimer’s and interact with their loved one appropriately. In the early stages, the disease has not changed your loved one too much, so your interactions with them should be rather typical. In the moderate stages, you may notice that the loved one cannot remember names, seems uncomfortable in groups, constantly repeats things, and might not remember recent memories. To make the loved one feel more comfortable, Rubinstein suggests talking about older memories, holding one-on-one conversations, and being patient with your loved one. In the latter stages, your loved one may not have the ability to hold a simple conversation, but they still have feelings, so a hug, a touch or squeeze of the hand is meaningful or comforting, the writer wrote. It is becoming more widely accepted that patients with dementia respond to music. Since it is the Christmas holidays, singing the traditional songs should warm everyone’s heart. Caregivers are the focus of Rubinstein’s last consideration. Caregivers should let themselves off the hook and decide what they can do and what is too much for them. Again, another concern for caregivers during the holidays is to adapt to conditions and forgo pushing yourself too hard to make things how they used to be, Rubinstein wrote.
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Gifts for caregivers that show you care
Choosing the perfect gift for family members and friends could involve a lot of thought. If there is a caregiver on your list, the decision could be that much harder. When shopping for caregivers, Michael Noe and Miriam R. Callahan say we should choose gifts that will make caregiving easier and provide a much-needed respite for them. Noe, an associate dean at the University at Buffalo School of Public Health and Health Professions, and Callahan, a clinical assistant professor at the same school, recommend that we select gifts that show we care about the caregiver. It is common knowledge that caregivers, who care for a person with Alzheimer’s disease or other forms of dementia, are under a lot of stress. Anything that a friend or family member can do to acknowledge that stress and help the caregiver deal with it, essentially caring for the caregiver, will make an enormous difference, Noe said. Noe and Callahan devised a short list of gifts for caregivers. Items on the list include movie tickets, dinner out or work performed by professional housecleaning, snowplowing or landscaping services. They also suggest gifts of time, where the giver offers to stay with the loved one with Alzheimer’s, giving the caregiver the opportunity to do whatever they want. Another suggestion is to flip the usual roles and pamper the caregiver. With this gift, the caregiver is the recipient of the attention from businesses such as spas or salons. Noe and Callahan offered a list of ideas to ease the burden of caregiving. Portable grab bars, a type of lazy Susan that makes it easier for people with mobility problems to get into and out of vehicles, respite videos, books by other caregivers, and Alzheimer’s-proofing the residence would be viewed as cherished gifts by any caregiver. Buying identical copies of items is also a good suggestion to reduce the loved one’s anxiety when their favorite piece of clothing is in the wash or an item is temporarily missing. Perhaps the best gift for a caregiver might not involve a trip to the mall or much thought. One of the best things family members and friends can do for caregivers is to listen, communicate and be honest, Noe and Callahan said.
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Give thoughtful gifts to caregivers and loved ones by employing creativity
If you are still looking for gift ideas for caregivers and their loved ones with Alzheimer’s disease, Tom and Karen Brenner have a few additional ideas that involve a little creativity. The Brenners are Montessori gerontologists who research, train, consultant, and write articles in a bid to change the culture in the field of aging. With all their interests, they learn various ideas from a variety of people. One of the ideas is the creation of a “Job Jar.” The idea comes from Denise Brown, who created a Web site about caregiving, the Brenners wrote, in an article for the Alzheimer’s Reading Room Web site. To use the Job Jar, a caregiver fills the jar with slips of paper that contain tasks, primarily errands or chores that would be most helpful to them. Employing the Job Jar aids caregivers by eliminating the halfhearted attempts of family members and friends who want to help, but rarely offer to perform a specific task. With the Job Jar, the caregiver is virtually guaranteed to get the help they need without asking for it, the Brenners wrote. Another idea, collecting stories from someone’s life and transforming the tales into a book, is a favorite project of the Brenners. During the holidays, a beloved family member of the loved one with Alzheimer’s can read the book aloud to those gathered during a family celebration. The main objective of the book is to share memories and stories from the loved one’s life, the Brenners wrote. These ideas will help you give a gift that is a little different and more meaningful than the usual presents purchased at the big-box stores.
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Plan quiet celebrations if your family includes a loved one with dementia
With the holidays upon us and family and friends in close proximity, caregivers should still keep a watchful eye on their loved ones with Alzheimer’s disease. There is no better situation than surrounding oneself with love and kindness, but holiday gatherings can be extra stressful for patients with dementia. Sheryl Ubelacker, a health reporter for The Canadian Press, reminds us that the holidays present unanticipated challenges for families with a loved one with Alzheimer’s disease. The writer uses the experience gained last year by Linda Finkbeiner of Exeter, Ont., when she and her husband Jim traveled to their son’s house for a Christmas brunch. Doctors diagnosed Jim Finkbeiner with early-stage Alzheimer’s when he was 64 years old. During their holiday visit, Jim experienced a sensory overload from the overcrowded house, the noise, and his three grandchildren, Linda Finkbeiner said. The excessive stimulation agitated him and he just kind of withdrew to another room for some quiet time, she said. A little while later, he wanted to go home, and after their arrival, he went straight to bed at 2 p.m. That experience ended their holiday celebration for the day. However, Finkbeiner said she was more disappointed in herself that she had not anticipated that a joyful celebration would lead to a sensory overload for her husband. While putting up blinking, multi-colored lights, shiny decorations, and a Christmas tree are traditional ways to mark the holidays, decking the halls can lead to anxiety for loved ones with dementia, Ubelacker wrote. For the person with dementia, their ability to take in all that stimulation and to handle it well is reduced, said Kathy Hickman, education manager for the Alzheimer’s Society of Ontario. Memory includes logic, knowledge, concentration and judgment, so the constant decline of our recollections can lead to some unexpected behaviors, said Nataly Rubinstein, a licensed clinical social worker and certified geriatric care manager. To make the holidays more enjoyable for loved ones with Alzheimer’s, the best recommendation is to plan for modest celebrations with less activities. During these celebrations, continue to involve the loved one with dementia, especially in the early stages, Hickman said. After a diagnosis, some family members may decide not to include the loved one with Alzheimer’s in the festivities, which can be really difficult for the patient, she said. Eliminating a person with dementia from family activities may make them feel as if they are not being included and not an important part of the family, Hickman said. This year, Finkbeiner plans to attend the brunch with her husband because it is Christmas, she said. This time she plans to make it a comfortable Christmas for Jim. Her advice to others caring for a loved one with dementia is to recognize the signs that things are not going well for the person and to be prepared to alter plans. In other words, be adaptable, Ubelacker wrote.
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Caregiver burnout creeps to the forefront, briefly
Caregiving is a tough job for everyone who takes on the responsibility. Without any formal training, most family caregivers step into the role with no idea what to expect. At first, the patient just needs a little help and the role of a caregiver does not seem so bad. As the loved one requires more and more assistance with the tasks of daily living, the role of a caregiver becomes a 24/7 job when the effects of the progression of Alzheimer’s disease advances to the latter stages. Eventually, the responsibility might overwhelm a caregiver. Celia Watson Seupel, a writer who contributes to The New York Times’ “New Old Age” blog, slid into the realm of caregiver burnout while she was struggling with an ideal for a new book. Seupel’s article sheds light on how caregiver burnout sneaks up on you and why it is hard to recognize. For the last year and a half, Seupel has cared for her mother, who has vascular dementia. Her mother lives with her in New York City. After one unproductive day of working on her book ideas, she knew she still had to care for her 93-year-old mother. As she exited her home office, Seupel found her mother waiting and ready to go to a friend’s house for lunch. Her mother said it was 11:24 and asked her if it was time to head off to their appointment. Seupel exploded in anger as she reminded her mother to look at the schedule on the whiteboard, which listed their departure time at 11:45. Her explosive reaction left Seupel feeling like a bad person, but she thought she was just having a bad day. As the days passed, her outlook did not get any better and she felt irritated with everything done by her mother. While the writer had heard about the adage that caregivers “should take care of themselves,” she did not realize that she had neglected herself. She enacted some of the tips about caring for a patient with Alzheimer’s and set herself and her mother on a schedule. The event left her wondering why she suddenly disliked her mother and hated taking care of her. Barry J. Jacobs, a psychologist and author, contributed Seupel’s feelings to a matter of resentment, calling it a clear sign of burnout. Sometimes caregivers have a difficult time distinguishing between resenting the caregiving and resenting the person, he said. Resentment, anxiety, depression, sleep issues or feelings of dread are some of the symptoms of caregiver burnout. Since most family caregivers lack any formal training, they probably do not recognize the signs until they are “very symptomatic,” Jacobs said. Taking on the responsibility of being a caregiver may stem from family obligations where caregivers put their aspirations on hold to do all they can to assist their loved ones. Before she began serving as her mother’s caregiver, Seupel practiced mediation. She resumed the practice after a friend asked her if she still did it every morning. When she finished her first session of meditation, she emerged to find her mother standing on their balcony. She saw her mother bathed in a new light and all the feelings of the love she had for her mother came rushing back to her. Seupel realized she did not hate her mother, but she was spiritually and emotionally exhausted. After her realization, she reduced her reliance on the schedule of routines, made time to go out with friends, and started taking respites. From her experience, Seupel learned that taking time for herself is fine, but what counts is how important the quality of that time is, she wrote.
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University of Iowa presents a free colloquium on legal issues and dementia
The more we age, the greater our likelihood of developing Alzheimer’s disease. Alzheimer’s research shows that advanced age is one of the factors that trigger the onset of the condition. This year, large portions of the generation known as baby boomers began to hit the big 6-5. By 2030, when that entire generation is over 65, the number of older Americans with some form of dementia will reach epidemic numbers. Without some assistance and guidance from advocates, health experts, and the federal government, many of these older adults will lose their capacity to make decisions about their health and wealth. In a bid to start filling this void, the University of Iowa College of Law’s National Health Law and Policy Resource Center (NHLP Resource Center), has invited the public to take part in a free class. The colloquium, titled “The Aging Population, Alzheimer’s and Other Dementias: Law & Public Policy,” is set to address the legal needs of the aging population and the basics of Alzheimer’s disease. The colloquium, which is a conference where specialists deliver addresses on a topic and answer questions related to them, will be broadcast via the Internet during the spring semester. The first session starts on Thursday, January 12, 2012. The class meets on Thursdays for a total of 13 weeks. Nationally recognized legal and public policy experts will join with specialists, on Alzheimer’s disease and geriatric care, to lead the sessions. Josephine Gittler, a professor of law at UI and the director of the NHLP Resource Center, and Dr. Kathleen Buckwalter, a professor emerita of gerontological nursing at UI and a co-director of the NHLP Resource Center, are the course’s instructors. Please click here to view the class schedule and get the reading material associated with each session. You can watch the presentation live as it occurs or download the session as a podcast at your convenience.
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