Announcement by Pat Summitt sheds light on early-onset Alzheimer’s disease
Pat Summitt’s disclosure that she has early-onset Alzheimer’s disease is raising awareness about the lesser-known form of Alzheimer’s. With the start of the semester and daily basketball practices just around the corner, the coach of the University of Tennessee Lady Volunteers struggled with the decision to go public with her diagnosis. Reporter Jenifer Goodwin used Summitt’s announcement as a primer to shed light on early-onset Alzheimer’s in an article for HealthDay. People familiar with Alzheimer’s disease generally know symptoms of the condition usually start after age 65. The early-onset form of the disease develops before the age of 65 and even afflicts some people in their 30s and 40s. More than 5 million people in the U.S. are living with Alzheimer’s disease. Part of that number includes 500,000 Americans, or about 5 percent of the total number of cases, who have early-onset Alzheimer’s disease, said Dr. Zoe Arvanitakis, a neurologist at the Alzheimer’s Disease Center at Rush University Medical Center in Chicago. A diagnosis of Alzheimer’s is devastating for anyone, but it may be a bigger blow for younger patients who are in the mid-point of their careers, raising families, and paying off the mortgage. Goodwin also points out that health experts say early-onset Alzheimer’s progresses faster than the late-onset form of the disease. For older patients, it takes about 10 to 15 years after symptoms first appear before an individual would lose so much of their mental abilities that they are truly disabled, said Dr. Gary Kennedy, who is the director of the division of geriatric psychiatry at Montefiore Medical Center. For younger patients, the time to disability is usually around five years, he said. Scientists are unsure what causes the development of early-onset Alzheimer’s, but they note that gene mutations and family history can play a role, Goodwin wrote. As awareness of Alzheimer’s disease rises, there is more help for those with early-onset Alzheimer’s. Patients with early-onset Alzheimer’s can take advantage of a federal law that allows them to receive Social Security disability insurance and supplemental security income more easily, Arvanitakis said. While her diagnosis is now public, the 59-year-old Summitt intends to continue her tenure as head coach for three more years. Goodwin cites a Washington Post article in which Summitt said she told her players about the diagnosis. I just want them to understand that this is what I am going through, but you do not quit living, Summitt said, you keep going. With eight national championships under her tutelage, Alzheimer’s is in for a tough fight.
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The thought caregivers want to take back
When the pain becomes too much to bear, sometimes a surprising thought pops up, however so fleetingly. It happened to Paul Harasim. He serves as the family caregiver to his 88-year-old mother. His mother has battled Alzheimer’s for a couple of years and now she is in the latter stages of the condition. One day while visiting her in the care facility where she resides, Harasim noticed his mother’s blank stare. He remembered she said she would rather be dead than go through a slow, agonizing passing. The blank stare that becomes more of who she is each day cries out that she is helpless in this world, wrote Harasim, a columnist and medical reporter for the Las Vegas Review-Journal. This may have been when Harasim thought that his mother would be better off dead. Of course, he does not mean it, and he begs for forgiveness. He notes that a loved one’s Alzheimer’s disease can mess with the caregiver’s mind as well. In Las Vegas, residents in the vicinity seek help at the Cleveland Clinic Lou Ruvo Center for Brain Health, Harasim wrote. The clinic offers free support groups and psychotherapy sessions to family members with loved ones stricken with Alzheimer’s. The round-the-clock caregiving that Jean Georges provided to her husband caused her to suffer a stress-induced heart attack. She said she wishes the clinic was there to help her while she cared for her husband. Georges said she learned a golden rule to avoid arguing with patients with Alzheimer’s. She regrets the time she spent arguing with her husband and understands that his reality was different from hers. Harasim knows that if his thought came true, he would miss cherished moments that are still occurring despite his mother’s condition. About six months ago, he heard his mother talking. She mistook him for his father, but her talk centered on her son. She said she thought he was going to be OK, after he had moved to Las Vegas. She said she does not think her son gambles, so they did something right when they raised him.
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Learn to safeguard the finances of your loved one with Alzheimer’s
When a caregiver accepts the responsibility of caring for someone with Alzheimer’s disease, that also means they will do what they can to protect their loved one. After a period of time, the caregiver will realize that protection will include many aspects of the patient with Alzheimer’s life, including financial matters. One of the early symptoms of memory loss includes the loss of the ability to handle finances. Gary Joseph LeBlanc, who writes a syndicated column called “Common Sense Caregiving,” addresses the topic of Alzheimer’s and finances. LeBlanc, who served as the primary caregiver of his father for a decade, said he knew something was wrong when he recognized that his father was having trouble with daily finances. His father had a reputation of doing complex math equations in his head, LeBlanc wrote. The writer suggests checking bank and credit card statements for excessive purchases, looking for stacks of unopened mail or watching for trouble counting change as signs that may show difficulty in handling finances. LeBlanc said that sometimes caregivers or other family members do not realize the degree of the problem until a large amount of debt has already accumulated. Caregivers also have to be alert for calls from telemarketers and scammers, who are simply trying to rip off your loved one. For these types of thieves, caregivers should check for large numbers of packages being delivered, sudden changes in back account balances, and overdue bill notices. To safeguard your loved one, LeBlanc recommends attempting to re-route your loved one’s mail to a post office box to allow the caregiver to take a first-hand look at the patient’s finances. One tip he suggests is to swap out your loved ones credit cards with a pre-paid card and give them only small amounts of cash. LeBlanc said he always made sure his father had money in his pocket, which helped his dad feel more independent. His suggestions are good preventive measures, but what if your loved one has already gotten into major financial problems? Request a copy of a free credit report with your loved one’s name on it and investigate whether your loved one signed up for credit card insurance. Caregivers should also obtain a letter from the loved one’s doctor, stating they are permanently disabled from Alzheimer’s. The letter should state approximately when their symptoms began, LeBlanc wrote. If your loved one is a resident of a nursing home, get the administration to write a letter verifying that they are now under their care. These documents will serve to help your case if you have to appear in court. If a court case is necessary to arrive at a settlement, seek advice from an elder law attorney. LeBlanc says that paying for his advice may save you in the end. His last guidance is have a trustworthy person appointed as durable power of attorney shortly after a diagnosis of Alzheimer’s. Caregivers will receive more protection by placing P.O.A. (power of attorney) at the end of their signature, when they sign something on their loved one’s behalf.
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Fight caregiver isolation by staying connected to family members and friends
From marriage vows to family commitments, family caregivers strive to take care of their loved ones even if they have to do everything themselves. The responsibility of being a loved one’s primary caregiver takes a lot of love, understanding, and time. Doing all you can to care for a loved one often results in social isolation, resulting in caregivers losing their social connections to friends and family members who live great distances away. Lisa M. Petsche, a freelance writer who specializes in family life and elder care, says an effective caregiver is one that stays connected socially. Once a person begins to feel isolated, they may experience bouts of loneliness and depression. Petsche, writing in an article published in the Catholic San Francisco, proposes some ways to prevent or overcome isolation and avoid caregiver burnout. Her first suggestion involves a little assertiveness on the caregiver’s part. Petsche says take the initiative and invite friends over; do not wait for them to call or drop in. In a similar fashion, ask family members to help share some of the duties that help the patient with Alzheimer’s and the caregiver. If an offer of help comes along, caregivers should accept the offer instead of believing they can do it all themselves. Phone calls, email or letters are another way to stay in touch with out-of-area loved ones. Petsche recommended getting a portable phone to keep the conversation going while still completing some tasks while you socialize. Her other suggestions involve getting out of the house to enjoy your social circle. Caregivers can join a support group to talk with other caregivers who are in a similar situation and share tips or just shoot the breeze. To gain some personal time, Petsche recommends caregivers consider in-home respite or adult day care programs. While caregivers do have a “million things to do,” they must stay connected to family members and friends to preserve their well being and health to assist their loved one with Alzheimer’s.
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Selecting the right music can soothe your loved one with Alzheimer’s disease
An article by Leann Reynolds, on the Huffington Post Web site, discusses music therapy for patients with Alzheimer’s disease and gives some insight on how to employ it. To gain a soothing effect from your selections, Reynolds interviewed a few sources that recommend caregivers play music that produces a familiar connection to your loved one. Then, the caregiver must reduce other sensory stimulation from distracting noises to allow patients with Alzheimer’s disease to fully enjoy the music, said Martha Tierney of the Alzheimer’s Association. Alzheimer’s disease greatly affects a person’s short-term memory, but their long-term memory remains largely intact, Tierney said. That explains why people with Alzheimer’s disease savor music that was popular when they much younger. Reynolds, who serves as the president of Homewatch CareGivers, opened her article by telling readers about Celia Pomerantz and her mother, who died from Alzheimer’s disease at age 78. The daughter shared her mother’s history of cultural music and a love of dancing, which made it easier to get her mother to do the usual daily living activities. After playing Spanish music, I could convince her to do anything – we would dance over to the shower or out to get a meal, Pomerantz said. Because music speaks to a person’s feelings, there is no pressure to understand it and they can just experience it, Tierney said. For those who wish to find out more about therapeutic music for patients with Alzheimer’s, Reynolds includes a link to the American Music Therapy Association.
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Patients with dementia and caregivers differ on perceptions about care
No two people think exactly the same way, and that holds true for patients with Alzheimer’s disease and their caregivers. A study by researchers at Penn State University found that caregivers do not understand the things that are important to their relatives with dementia. The researchers contributed their findings to the perceptions that caregivers come to view their loved ones with dementia as unable to make their own decisions about daily life. For the study, the research team interviewed 266 pairs of people. Each pair consisted of a patient with mild to moderate dementia and a family member who served as the primary caregiver. The person with dementia had to meet the requirement that they lived in his or her own home. Each member of the pair underwent separate interviews by the research team, which was led by Steven Zarit, the study’s leader and a professor and head of the Department of Human Development and Family Studies at Penn State. The questions focused on how much importance the subjects placed on five core values: autonomy, burden, control, family, and safety. Our results demonstrate that adult children underestimate the importance that their relatives with dementia placed on all five core values, Zarit said. He provided an example that supports the study’s conclusions. While a loved one with dementia may feel it is very important to continue to attend family celebrations, their caregiver may feel otherwise. While Alzheimer’s robs the brain of most of its cognitive function in the latter stages, Zarit reiterated that the patients with dementia in the study were capable of making decisions for themselves and could express their vales in a clear and direct way. Zarit intends to expand his research by developing and evaluating techniques that will help improve communication between caregivers and their loved ones with dementia.
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