The holiday season is such a wonderful time to spend with family and friends. But sometimes for the elderly, the holiday season can be depressing, stressful, and sometimes confusing if their physical, emotional, and at times, mental needs are not addressed.
For many seniors, the holidays serve as a reminder of those that have passed on and how lonely he/she may be today. The holidays may also remind them of their inabilities to participate in celebrations, and how they can’t do the things they used to so easily anymore.
The struggle that we, as “caretakers” of aging parents have, is to provide a way for our elders to enjoy the holidays, but their circumstances can be a little challenging. The solution is to be present and include your elders by having them participate in as many activities as they can. Make sure your loved one feels a sense of belonging, or self-worth. Make them feel special by including them in holiday planning, dinner preparation, decorating, or even filling out holiday cards.
To make sure their holiday season (and yours) stays “merry and bright,” here are a seven things to keep in mind when caring for your elders:
1) Respect your senior’s schedule. If they are used to waking up, eating, or going to bed at a certain time, follow their schedule as much as possible. Staying up later or eating meals later can be difficult and cause unneeded stress. Ask about their schedule before planning your holiday gathering.
2) Older family members get tired very easily. Limit the number of activities or the length of time they are involved in each activity. Since noise and confusion of a large family gathering can lead to exhaustion, designate a “room to nap” where they can lay down and sleep. Be sure someone acts as a companion, making sure the senior is comfortable.
3) If you are planning to bring the holiday crowd to the home of an older person with memory impairment or behavioral problems, do not rearrange their furniture. This could confuse the person and cause anxiety. If the gathering is in another home, remove all slippery throw rugs and other items that could pose a threat to someone who has difficulty walking or has balance problems.
5) If an older adult has physical limitations but wants to help with the holiday preparation, have them do simple but helpful tasks like greasing pans, folding napkins, sorting silverware, arranging flowers, or handing you the ornaments when decorating the tree.
6) Reminisce about old memories. “Remembering when…” can stimulate memories which will help seniors share their past experiences and tell their stories to family members of all ages. Avoid any comments that might embarrass them, such as, “don’t you remember?”
7) In addition to memories, seniors need new things to look forward to. Add something new to the holiday celebration, go window shopping, take a drive to see festive holiday decorations, or listen to the sounds of the season at a local restaurant.
8) Since most seniors are confined indoors, make sure their day contains activities that increase their exposure to daylight.
Remember, not every moment will be a delight, but don’t fret! Giving your elders your time, attention and love is their best holiday gift.
On The Today Show, AARP's family and caregiving expert Amy Goyer appeared with co-hosts Kathie Lee Gifford and Hota Kotband, and offered tips to help families find the necessary resources when they're faced with caring for loved ones, from figuring out immediate help for emergency situations to building a caregiving team and utilizing apps to stay organized.
On her blog, Goyer recapped and expanded the information presented on the show.
If you suddenly find yourself in the position of caregiver for a parent, spouse/partner, grandparent, sibling, adult child, friend or neighbor, here are some things to do immediately:
- If a loved one is unexpectedly hospitalized, ask to speak with the hospital social worker and discharge planner right away — don’t wait until discharge. They will help you plan for care at home or in a nursing or rehab facility.
- Contact your local area agency on aging to find out about home and community-based services; many also offer assessments to help you put together a care plan. You can call 800-677-1116 to find yours.
- Contact a geriatric care manager, who can help you navigate, coordinate, create and even implement a care plan. Find one at the Aging Life Care Association.
- Go online to the AARP Caregiving Resource Center for information about all aspects of caregiving, and check disease-specific organizations such as Alzheimer’s Association or American Stroke Association.
Then what? Here are some ways to make it all work:
- Build your caregiving team. Assess what you can do to help, then fill the gaps with other people and services. Broaden your thinking about that team. Include family members; their friends and yours; neighbors; your faith community; volunteers through veterans groups, hospice or palliative care programs; personal care providers such as hairstylist/manicurist; paid home health care aides or certified caregivers; service and respite care agencies; adult day services centers, where your loved ones can spend part of the day; transportation services; and meal delivery. Remember that sometimes you’ll also need help for you, the caregiver, so you are freed up to provide the care that only you can/want to provide.
- Connect with other caregivers. We learn the most from each other. Join an in-person support group; your area agency on aging, caregiving organization, hospital, faith community or disease-specific organization will have a list of groups. It can be especially helpful to connect with people who are dealing with the same health issues. If you can’t get there in person, find ways to connect online through support groups, discussion groups or an online community such as AARP’s online caregiving group, which can help answer questions and boost your morale. Check Facebook groups. You can also connect with other caregivers at local or online caregiving educational events like AARP’s Virtual Caregiving Fair.
- Get organized. There are only so many hours in the day, so the only way to juggle life, work and caregiving is to get organized in terms of the information overload, mounds of paperwork, time management and team coordination. There are many basic ways to do this, such as packaged filing systems and asking a professional organizer for a consultation. But technology is transforming caregiving: There are many apps that make life easier — we’ve transitioned from a Rolodex and notebook to caregiving apps! There is one called Balance, which is specifically for dementia caregivers; CaringBridge and Lotsa Helping Hands both help coordinate support and can share updates on your loved one’s status; and the new AARP Caregiving app helps us communicate with and delegate to our team, create medication lists by taking photos of the medication label, keep easily accessible notes of health changes, create task lists and document with images.
- Care for yourself, too. It’s not selfish; it’s practical. We don’t expect our cars to run on empty, but we seem to expect ourselves to. We need to keep filling our own tanks in order to have the energy to care for others. You’ll need quick tank fillers, like a cup of coffee, a phone chat with a friend, or a walk around the block; premium fill-ups — i.e., a few hours away from caregiving; and periodic tune-ups, such as a week’s vacation or a retreat. Also, don’t forget the routine maintenance: health checkups, good nutrition, exercise and sleep as a top priority (everything is twice as hard when we’re tired). Enlist friends and family to support you in taking time for yourself.
This week, Susan Schneider, the widow of Robin Williams has started speaking out about her husband's suicide and the post-death diagnosis of Lewy Body Dementia, which he was suffering from.
According to an interview with Good Morning America, Schneider revealed that although the Oscar-winning actor was not diagnosed until after an autopsy was completed, Williams had exhibited signs of mental disarray years before his death.
"In November of 2013, he had a little gut pain. Next month, it was another symptom. It was like this endless parade of symptoms and not all of them would raise their head at once. It was like playing Whack-a-Mole. Which symptom is it this month?" Schneider recollected. "I thought, 'Is my husband a hypochondriac?' We're chasing it and there's no answer. By now we tried everything." The months of visible depression, anxiety, and paranoia led to a diagnosis that Williams was in the early stages of Parkinson's disease.
However, according to Schneider, it was his undiagnosed mental illness that truly led him to take his own life. Despite this high profile case, not everyone with Lewy Body Dementia is suicidal.
In fact, Lewy Body Dementia (LBD) is a very serious condition that is often overshadowed by its more well-known cousin, Alzheimer's disease. To clear up some of the confusion, here are 8 things everyone should know about LBD:
1. It affects millions: At last count, somewhere around 1.3 million Americans are affected by LBD, the second most common form of dementia (behind Alzheimer's disease).
2. It's not Alzheimer's: One of the typical misconceptions about Alzheimer's disease is that it is the same thing as dementia. However, Alzheimer's is but one form of dementia, the term used to describe an impaired mental state that is caused or accompanied by any of the following: impaired memory, issues with decision making, trouble with problem solving and difficulty when trying to learn new skills. There are crucial differences between dementia that is caused by Alzheimer's disease and LBD. For one thing, people with LBD experience unpredictable changes in their cognition, regardless of the time of day, whereas people with Alzheimer's tend to have more trouble when the sun goes down—a symptom referred to as "sundowning." Those with LBD also tend to have more hallucinations and movement issues, whereas the hallmarks of Alzheimer's are memory loss and trouble performing familiar tasks.
3. It's difficult to diagnose: As with Alzheimer's, LBD can only be conclusively diagnosed by doing a biopsy on an individual's brain after they have died. When diagnosing living patients, doctors consider the person's symptoms, interview their family members, perform physical and mental evaluations, and conduct blood tests and brain imaging tests (MRI, CT). The main indicator of LBD is, of course, dementia. Other symptoms of LBD include: problems with depth perception, hallucinations (often visual), delusions, paranoia, Parkinsonism (body stiffness, tremors, trouble walking), and physical issues such as heart rate and blood pressure fluctuations, constipation, fainting spells. To be diagnosed with LBD, an individual must have dementia as well as several of the aforementioned symptoms.
4. It can affect medications: An accurate, timely diagnosis of LBD is essential to avoiding dangerous medication reactions. Many drugs prescribed to people with Alzheimer's disease and Parkinson's disease—especially anti-psychotics—can have a dangerous effect on people with LBD. Neuroleptic Malignant Syndrome is a neurological disorder brought on by a negative reaction to neuroleptic or anti-psychotic medications that often occurs in people with LBD. Individuals who develop Neuroleptic Malignant Syndrome can experience muscular rigidity, high fever, variable blood pressure and severe sweating.
5. It's similar to Parkinson's: People with LBD often exhibit the same symptoms as those with Parkinson's disease dementia (PDD). While the two conditions start off differently, their biological underpinnings are closely related, and people with Parkinson's disease can be diagnosed with either condition. The primary factor that physicians use to distinguish between these LBD and PDD is when the cognitive symptoms first began. People who start to develop dementia within a year of their Parkinson's diagnosis are thought to have LBD, while those whose dementia symptoms start beyond the one year mark are thought to have PDD.
6. It can impact sleep: Sleep issues and dementia often go hand-in-hand, but there's a specific sleep condition that appears to disproportionately affect people with LBD. Studies indicate that as many as two-thirds of LBD patients grapple with REM Sleep Behavior Disorder (RBD), an ailment that causes them to move, speak and gesture during the REM (rapid-eye movement) stage of sleep.
7. It's unpredictable: One of the biggest challenges facing those with LBD and their families is the fact that symptoms of the disease tend to wax and wane erratically. Periods of mental fog, aggressive behavior, movement issues and vivid hallucinations can last seconds, minutes, hours or days. The fluctuations in symptoms can be caused by underlying infections, medications or a general worsening of the disease. Because of this, it can be nearly impossible to determine how far the LBD has progressed in a given individual. However, if the causal factor is capable of being fixed, then the person with LBD can often return to the level of functioning they were experiencing before their unexpected decline.
8. It has no cure: There is currently no way to cure or halt the progression of LBD. Those who've been diagnosed with the condition may be prescribed drugs to deal with certain symptoms. For instance, cognitive issues may be addressed with cholinesterase inhibitors, a type of medication that promotes brain cell function by affecting the neurotransmitter acetylcholine. For those with RBD, treatment with clonazepam or melatonin might help them sleep more soundly. And levodopa may be used to mitigate the effects of severe Parkinsonism. Occupational, speech and physical therapy are the most common non-pharmaceutical approaches to helping people with LBD manage their condition and function better during day-to-day life.
In The End of Memory: A Natural History of Aging and Alzheimer's, award-winning science writer Jay Ingram shares the history of the debilitating disease, from its discovery in the early 20th century to where the search for better treatments -- and hopefully, a cure -- stands today.
Here, five facts Ingram dug up that piqued our interest.
1. The First Thing That Happens to a Brain with Alzheimer's Isn't What You Think
We associate Alzheimer’s with two main changes in the brain: the buildup of amyloid plaques between neurons and tangles of tau protein within neurons. But the first sign of the disease in the brain is actually a loss of synapses that pass information from neuron to neuron. Once they go, the neurons follow suit (a dramatic decrease in neurons is also a hallmark of the disease). It's even possible to have a brain full of plaques and tangles and be sharp as a tack. In one study (aptly named the Nun Study), a group of nuns agreed to let researchers track their health, behaviors, mental status and, in the end, autopsy their brains. One participant in particular stood out: Sister Mary lived to the ripe old age of 101 and appeared to be smart, alert and attentive until the end. But when researchers examined her brain, they found that it was brimming with plaques and tangles.
2. "Dear Abby" Helped Bring It Into the Spotlight
In 1906, when a group of psychiatrists were told about the very first patient diagnosed with what we now call Alzheimer's (by Alois Alzheimer himself), not one asked him a question. The chairman of the meeting actually remarked, "Clearly there is no desire for discussion." It wasn't until the 1970s that Alzheimer's was recognized as a disease and not, as previously thought, just a hazard of aging. In 1980, a letter to the syndicated advice column "Dear Abby" sparked the public's interest. "Desperate in New York" wrote in to ask if Abby had ever heard of Alzheimer's, and if so, did she have any thoughts on how to handle it. The columnist told readers with similar questions to send them to the newly formed Alzheimer's Association, and more than 20,000 letters soon poured in.
3. Your Writing Style May Tell Researchers Something About Your Risk
The journals of your youth could offer a clue as to whether you'll develop the disease, suggests another discovery from the Nun study. In 1930, 20-year-old nuns were asked to write a few sentences that touched on their birthplace, parents, education, life events and why they joined the convent. Up to 60 years later, the researchers tallied up their idea density, or how many different pieces of information, on average, were packed into each sentence and found that the lower the idea density, the higher the likelihood the writer would eventually develop Alzheimer's. Ninety percent of the nuns who developed Alzheimer's were found to have had low idea density in their youth compared with 13 percent of those who remained free of the disease.
4. Rita Hayworth Was the First Celebrity to Battle It in the Public Eye
New York's gossip scene was buzzing with the news that Hayworth's co-op was threatening to kick her out because fellow residents claimed she was constantly drunk. When a writer for the Daily News got wind that Hayworth was dealing with Alzheimer's, not alcoholism, he spoke with an Alzheimer's researcher then took the co-op board to task (in the newspaper, of course) for bungling the situation. Hayworth was diagnosed in 1979 and died of complications from the disease in 1987.
5. There's a Correlation Between Down Syndrome and Alzheimer's
And it has to do with genes. In the 1940s, a doctor found fewer neurons plus plaques and tangles in the brains of three Down syndrome patients, just as in those who suffer from Alzheimer's. Years later, a researcher at the University of Minnesota discovered that Alzheimer's patients had an unusually high number of relatives with Down syndrome -- he expected to find 1 such connection per patient, but several in the group he studied had 6. Turns out a gene that leads to the release of amyloid beta (what plaques are made of) when a mutation occurs sits on chromosome 21, the same chromosome that Down syndrome patients have an extra copy of.