It happens to everyone, I think. The missing keys, the lost word, that moment when you walk into a room and forget what you came in for. When it happens to me, I get a brief moment of fear that it might be something a little worse and a little more frightening than simple forgetfulness. At my age, I worry that it might be just a harbinger for more serious things to come.
Still Alice is a story that takes us into the world of a woman — a scholar, wife, and mother — for whom that fear becomes a reality when she’s diagnosed with early-onset Alzheimer’s disease. Based on Lisa Genova's 2007 bestselling novel of the same name, it’s the story of a linguistics professor who struggles to hang on to her memories, and herself during her swift deterioration. And by all accounts, Julianne Moore's performance is incredible.
Early-onset Alzheimer’s disease is a fairly rare form of dementia that strikes people younger than 65. As in the movie, it’s common for those with the disease to exhibit symptoms beginning in their 50s. Most early-onset Alzheimer’s is genetic, and although not backed by hard data, the perception is that early-onset Alzheimer’s progresses more quickly than Alzheimer’s disease experienced later in life.
The movie co-stars Kristen Stewart, Kate Bosworth, Hunter Parrish as Alice’s three grown children who watch their brilliant mother fade away while learning they may inherit her disease. Alec Baldwin co-stars as her husband, and after the great chemistry they showed on 30 Rock, I can’t wait to see them together here in a more dramatic pairing.
Here’s a clip from the movie in which Julianne Moore’s Alice discusses the short but beautiful lifespan of butterflies with her family caregiver, daughter Lydia:
The movie, and especially Ms. Moore’s performance (The Hollywood Reporter's Scott Feinberg calls it “nuanced and heartbreaking,”) were such a hit at the Toronto International Film Festival that there’s been a lot of talk about this role finally garnering her an Oscar. She’s had four nominations but no wins to date.
If you live in New York or Los Angeles, you’ll be able to see the movie on December 5, 2014 (in time to be considered by the Academy). For the rest of the country, the film is set for U.S. wide-release on January 16, 2015.
I remember reading the Caregiverlist Alzheimer's Diary by Norm McNamara back when we published it in 2011. Mr. McNamara gave us a peek into what living with Alzheimer’s is like in that one-day entry. I imagine the heartrending research Julianne Moore must have gone through to prepare for her role. These point-of-view looks into the life of those afflicted with memory loss disease is as close as I want to get, but I think it’s so valuable for us to see and try to empathize with the millions of Alzheimer’s sufferers around the world.
Americans are living longer than ever. One hundred years ago, in 1914, a man’s life expectancy was 52 years, a woman’s almost 57. If you are 65 years old in 2014, the Centers for Disease Control and Prevention estimates that as a man, you will live to about 83 and if you are a woman, your life expectancy is about 80 ½ years old.
In order to address the needs and concerns of an aging population, the White House is gearing up for its sixth White House Conference on Aging (WHCoA), to be held in 2015. The first conference was held in 1961, with subsequent conferences held each decade since.
Next year marks the 50th anniversary of Medicare, Medicaid, and the Older Americans Act. It’s also the 80th anniversary of Social Security. The 2015 White House Conference on Aging is an opportunity to look at these programs and see what public policies need to be implemented to understand the issues facing older Americans, their families and their caregivers.
WHCoA in 2015 will address four main issues: retirement security, healthy aging, long-term services and supports, and elder justice.
Financial security for retirees has changed in the last few decades, with fewer employers providing pensions. The future of Social Security is always in question and the need to protect that benefit is crucial to U.S. citizens retiring with dignity. Many older Americans have seen their retirement savings fall with the economy. The question of when to retire is being replaced with IF to retire. The conference will address “improving wages and benefits for all American workers—especially older workers—and ensuring opportunities for older Americans who choose to remain in the workforce, can provide additional avenues for income security in retirement.”
Healthy aging is made possible with better life choices including healthy eating, exercise, health screenings and supportive communities.
Senior care costs continue to escalate and it’s a fact that as we live longer, many of us will need assistance with the activities of daily living, whether it be through home care, assisted living, or nursing homes. Less than three percent of Americans currently have a long-term care insurance policy. WHCoA will explore new options to help Americans in preparing for their long-term care needs as they age.
The elderly are one of the most vulnerable segments of our society. Scam artists are just waiting to bilk people out of their savings. Physical and emotional neglect and abuse cut across economic, racial and ethnic lines, affecting seniors regardless of where they live.
Americans are encouraged to participate in the discussions. The White House is being more inclusive than ever before, bringing the conference online at www.WhiteHouseConferenceOnAging.gov, which will provide regular updates on Conference events and activities. You can get involved by signing up for weekly emails, or sharing your thoughts on elder issues or stories celebrating the contributions of older Americans.
As you senior caregiver readers know, I’ve embarked on a mission to bring some technology into my elderly mother’s home so she can live independently longer, the way she wants to live. I made a list of her needs, the most important of which are keeping safe, connected, and engaged.
My mother is not alone in her needs. The 80+ age group is the fastest-growing segment of the world’s population. By 2050, it is estimated that there will be 392 million persons over the age of 80, more than three times the present. At the same time, there will be fewer caregivers for the elderly. Smaller and more geographically disparate families mean fewer family caregivers. We are already experiencing a shortage of trained certified nurse assistants and home care aides. And, of course, ever-increasing senior care costs, whether in the home or in an institutional setting, means the entire system of elderly care needs to be rethought.
Technological advancements are growing exponentially, just as is our elder population. It makes sense, then, that someone utilize the advances in technology to address the true needs of people. The Jetsons’ Rosie, Luke Skywalker’s C3PO, fiction is rife with examples of robot family helpers. Beyond the physical assistance these robots provided, they were also companions and assistants. Those imaginings are now becoming reality.
Jibo, the “world’s first family robot”, is the brainchild of MIT professor and social robotics pioneer Dr. Cynthia Breazeal. Dr. Breazeal saw the necessity for technology that supports the needs of the human being.
“I do this because I want to empower people to stay healthier, to learn better, to age with dignity and independence (my emphasis)”, Dr. Breazeal writes on the Jibo blog. “... to support more empathic and emotionally engaging telecommunication with those you love, to delight and surprise & entertain so that people laugh and experience joy and wonderment more often, and to make our lives just a bit easier with a touch of technological magic.”
For seniors, that means an “attentive companion that can help you live with greater independence and stay connected to those you love.”
Here’s what Jibo can do (from the Jibo website):
Two hi-res cameras recognize and track faces, capture photos, and enable immersive video calling.
360° microphones and natural language processing let you talk to Jibo from anywhere in the room.
Hands-free reminders and messages, so you'll never forget and can always be in touch.
Artificial Intelligence algorithms learn your preferences to adapt and fit into your life.
Like a personal assistant, Jibo proactively helps you, to make everyday tasks simpler and easier.
Communicates and expresses using natural social and emotive cues so you understand each other better.
Here's Jibo in action:
The Indiegogo campaign to crowdsource funding for Jibo started on July 16 and ended on September 14, 2014 and raised $2,289,506, and astonishing 2,290% of its $100,000 goal. Those numbers make it the most successful technology campaign on Indiegogo to date.
Over 4,800 Jibos were pre-ordered at $499, 28% of which are Developer Editions and upgrades (new application development is ongoing.) 71 Jibos will be donated to Boston Children's Hospital.
What do you think about Jibo and the future of carebots? Is this something you would welcome into your home? Personally, I’d love to see it in action. And if the response on Indiegogo is any indication, Siri’s in for some stiff competition.
Leeza Gibbons is an Emmy Award winner and a longtime champion for Alzheimer's care. After losing both her mother and grandmother to Alzheimer’s disease, she began her campaign to spotlight memory disease and help families and caregivers find the tools and information they need to best support those in their care.
Now Ms. Gibbons and her husband have decided to invest in and become franchise owners of one of the nation's largest in-home senior care companies, Senior Helpers.
Choosing a senior caregiver is, as she puts it, “a delicate decision” because they become like family. There is a great deal of trust that is placed in the hands of those caring for the elderly, who are some of the most vulnerable people in our society.
“Senior Helpers provides trusted and dependable care and encouragement to seniors and families facing devastating illnesses such as Alzheimer’s and dementia,” said Leeza Gibbons on the Senior Helpers website. “This is the precise type of care I wish my family and I had when my mother and grandmother were suffering from Alzheimer’s. That is why I am proud to invest in Senior Helpers franchised business, to ensure that the best in-home care is available to support, empower and uplift seniors and their families.”
Many senior care agency owners began their careers caring for senior loved ones. Seth Zamek Owner, Senior Helpers, Fort Mill, SC and one of our Senior Home Care Agency Experts decided to start his business in senior home care after both he and his wife and were caregivers for his mother-in-law during her battle with cancer, Caregiverlist’s own founder and CEO, Julie Northcutt, owned a senior care agency prior to establishing Caregiverlist.com
“This is just an opportunity that’s getting bigger and bigger,” says Ms. Gibbons. “It’s here and we all have to get on board and figure out how to deal with it.
Ms. Gibbons is also seeking to convert a landmark home in Lexington County, South Carolina into a caregiver assistance facility. With area philanthropist Michael Mungo, Ms. Gibbons is planning to provide a center aiding people caring for others with major diseases and wants the center to offer free services for those coping with the stress of caring for someone with chronic or terminal illness.
More information about Ms. Gibbons and her decision is in this Entrepreneur article.
Elder abuse can take many forms. Caregiverlist’s own basic caregiver training helps caregivers recognize abuse and neglect, and learn the legal requirements for reporting physical, emotional, sexual and financial abuse.
Financial abuse of the elderly is a racket that takes in nearly $3 billion dollars every year and that figure rises annually. Because seniors are especially susceptible to scams and frauds, the the U.S. Department of Justice (DOJ) has recently launched the Elder Justice website.
At an outreach event earlier this week, Associate Attorney General Tony West stated, “The launch of the Elder Justice website today marks another milestone in reaching our shared goal of keeping older Americans safe from abuse and neglect.” He added, “The more we embrace our elders with respect and care, the stronger our society will be. This tool helps move us closer to that goal.”
The Elder Justice website will serve as a resource victims of elder abuse and their families, who often feel alone, embarrassed, and unsure of where to turn for help. Prosecutors, researchers, and professional practitioners who work with elder abuse will find a forum to share information and resources to fight elder abuse, scams, and financial exploitation in an effort to support older adults.
Nearly one in every 10 Americans over age 60 experience abuse and neglect, and those with dementia are at higher risk for abuse. Most (51%) of elderly fraud is perpetrated by strangers, although abuse by family, friends, and neighbors comes in second at 34%. Elder mistreatment by a known individual is especially prevalent because seniors are vulnerable and trusting in relationships with their families and caregivers.
There are two steps the DOJ along with the Department of Health and Human Services suggest communities, families, and individuals take in combating the epidemic of senior abuse:
- Learn the signs of elder abuse. Take a look at the Red Flags of Abuse Factsheet, provided by the National Center on Elder Abuse, that lists the signs of and risk factors for abuse and neglect.
- Report suspected abuse when you see it. Contact your local adult protective services agency. And, of course, make use of the new Elder Justice website.
Do you have an issue you'd like to see tackled on this blog? Connect with Renata on Google+
World Alzheimer’s Day was observed on September 21, 2014. Because of the nature of the disease, caregiving for a person with such a degenerative memory condition can be especially taxing.
According to the Alzheimer’s Association, in 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer's and other dementias – care valued at $220.2 billion. Alzheimer's and dementia caregivers had $9.3 billion in additional health care costs of their own, due to the physical and emotional burden of caregiving. This doesn’t even take into account lost employment income and the out-of-pocket costs associated with in-home care. A recent study showed that 54% of family caregivers of people with Alzheimer’s disease and other dementias had to go
in late, leave early, or take time off and 7% had to turn down a promotion due to the demands of caregiving.
Family caregivers are often reluctant to reach out for help. Middle-stage caregiving lasts longest and this is where most family caregiving occurs. The person living with Alzheimer’s doesn’t yet need the extensive (and expensive) care that late-stage Alzheimer’s demands, so often a spouse, child, or other family member provides the needed care. At this stage, the person with Alzheimer’s may have a more difficult time expressing their thoughts and may anger easily. They have an increased need for help as their independence decreases. Caregivers need patience and flexibility, but it’s important to realize that providing this level of care bring with it a higher level of caregiver stress and burnout.
You know how, on an airplane, the flight attendant will instruct passengers to, in case of emergency, place an oxygen mask on themselves before helping others? Same thing goes for family caregiving, especially when caring for those with AD or dementia. What starts out as a labor of love often turns into feelings of resentment, isolation, depression, and the physical problems (such as hypertension and coronary heart disease) associated with chronic stress.
Caregiver stress and caregiver burnout are prevalent and may counterac the caregiver’s original intent to keep the care recipient at home. For example, when caregivers report being stressed because of the impaired person’s behaviors, it increases the chance that they will place that person in a nursing home.
There are, however, several interventions that are proven to help the family caregiver.
Work with a Professional
A Geriatric Care Manager can help assess the needs of someone afflicted with Alzheimer’s and dementia and provide information, referral, and help with care coordination. They can be a strong advocate for the family caregiver.
Professionals can help resolve conflicts between caregiver and care recipient and help the caregiver work through emotional overload.
Find Support Groups
Online and offline, it is important to know you are not alone in your caregiving, and that the emotions you are feeling—as well as the physical challenges you experience are experienced by others as well.
Get Respite Help
Ask for help, hire help, demand help. Reach out before you burn out. Just because you don’t do it alone doesn’t mean you’ve failed. Much-needed breaks will make you a better caregiver.
Make Nutrition and Exercise a Priority
Many caregivers say they simply don’t have the time to care for themselves. If you aren’t healthy and strong, you can’t take care of anyone else. Lead your care recipient by example. Eat well and schedule exercise breaks.
September and October see Walk(s) to End Alzheimer’s all over the country. There may still be available dates in your area. See if you can start or join a team and see just how strong the caring community is.
And check back with this blog in November, which is not only National Alzheimer’s Disease Awareness Month, but also National Caregiver Month.
“When am I coming to live with you?” she asks almost every time I see her. My elderly mother lives alone and as days pass, it’s becoming apparent that she will soon need more help with her activities of daily living. She refuses to think of moving to assisted living and doesn’t want a “stranger” or a professional caregiver in her home. But a high second floor, and its myriad of stairs, is not elder-friendly. When I ask if she’d entertain the thought of living with my brother, in his one-story house, she looks at me as if I’d grown horns. No, she tells me, I’m the only one she would live with because, after all, I’m her daughter.
A recent study presented at the American Sociological Association's 109th Annual Meeting shows that female siblings are more likely to provide the lion’s share of elder caregiving in the family.
Study author Angelina Grigoryeva, doctoral candidate at Princeton University's Office of Population Research, analyzed data from the 2004 Health and Retirement Survey (HRS) survey of more than 26,000 Americans over the age of 50. The detailed questionnaire asked older Americans which tasks they need help completing, who helps them, and the length of time each person administered help.
The study showed that daughters average 12.3 hours of senior care each month, while sons provide only 5.3 hours.
"In other words," says Ms. Grigoryeva, "daughters spend twice as much time, or almost 7 more hours each month, providing care to elderly parents than sons." And it doesn’t matter if the daughters have their own children to care for, or have employment outside the home. According to Ms. Grigoryeva, daughters provide as much (care) as they can with given constraints, but sons provide less (care) regardless of constraints.
This finding is significant in many ways. First, it shows that while gender equality may be making strides in the workforce and with childcare, inequality is alive and well when it comes to eldercare. And because of the time demands of senior care, woman can suffer in their career opportunities and earnings. Caregivers endure financial burdens, as many caregiving costs are paid for out-of-pocket.
Caregiver health can suffer as well, due to caregiver stress. According to the National Alliance for Caregiving, caregivers struggle finding time for themselves, managing physical and emotional stress, and balancing family and work obligations. The stress has also been shown to result in a higher mortality rate.
So what’s the answer? How do we begin to change the societal view of women as primary caregivers? While sons tend to provide care in the way of physical activities, such as home maintenance, daughters are relied upon to provide emotional and more personal care. What can we do to make the level of care provided more equitable between siblings?
I love MasterChef. And Iron Chef. And just about any show that features competitive cooking.
If you didn’t see Monday’s MasterChef finale, I’ll stay clear of spoilers, but one of the final contestants, Leslie Gilliams, was complimented by Gordon Ramsay for disproving the adage “cooking is a young man’s game.” Mr. Gilliams is 56.
Seniors are an anomaly on MasterChef. The oldest contestant, Sue Drummond, was 61 when she competed on MasterChef New Zealand. Kumar Pereira was MasterChef Australia’s oldest ever Top 24 contestant at 62.
While a small number of contestants were a bit older, the food they presented was not necessarily food that should be served to older adults.
As we age, it’s harder for our bodies to fight off the germs and bacteria found in raw or undercooked food. Salmonella, E. coli, and other bacteria can grow to high levels in some of the “healthiest” and tastiest dishes. Some of the MasterChef dishes that are not necessarily elderly-approved included:
- Ceviche: a seafood dish especially popular in South and Central America. The raw fish is “cooked” by curing it in citrus juices such as lemon or lime.
- Raw or undercooked eggs: these are found in Hollandaise sauce, homemade Caesar salad dressing, and tiramisu.
- Raw meat: like carpaccio (thin shavings of raw beef fillet) and steak tartare.
- Raw fish: shellfish, such as oysters, mussels and clams, and raw fin fish, like sushi and sashimi.
- Soft cheeses: cheeses like feta, Brie, or Camembert (my favorite!) can be breeding grounds for bacteria.
Senior caregivers need to be especially careful when preparing meals for the elderly. Yes, the food needs to be palatable, look appealing, and be nutritious, but meals should be safe, first and foremost.
If you are a caregiver who subscribes to Caregiverlist’s newsletter, The Caregiver’s Gist, you know we provide a delicious, nutritious recipe—safe for seniors.
We’d also love to hear from you caregivers. Do you have a special recipe that your senior client or loved one especially enjoys? Send it to me at firstname.lastname@example.org. I promise to try them all and report back on my favorites. Who knows? Maybe your recipe will make it into an online Caregiverlist safe-for-seniors cookbook.
And I’d like to challenge the MasterChef franchise. Your MasterChef Junior, the kids version of MasterChef, was incredibly popular. So popular in fact, that MasterChef Junior returns for Season 2 on Friday, Nov. 7. Come on, Chef Ramsay, how about a MasterChef Senior?
Falls—they’re not just for seniors. However, whereas my recent tumble after meeting with a Chicago pothole resulted in some scrapes, bruises, and a banged-up ankle, injuries from falls for the elderly can be much more dire.
Have a nice trip, see you next fall!
September 23 marks the first day of fall in 2014, and it’s also the 6th annual National Falls Prevention Awareness Day, sponsored by the National Council on Aging (NCOA). This year's theme is Strong Today, Falls Free Tomorrow, and seeks to unite professionals, caregivers, and older adults in raising awareness and preventing falls proactively.
We at Caregiverlist have written a lot about falls and fall prevention over the years, and there’s good reason for that. Among older adults (those 65 or older), falls are the leading cause of injury death—over 21,700 older Americans die annually from injuries related to unintentional falls. By 2020, the annual cost of fall injuries (direct and indirect) is expected to reach $67.7 billion, according to the CDC. Those senior who survive falls can face long post-hospital nursing home rehabilitation.
The American Occupational Therapy Association (AOTA) and other professional associations, along with several federal agencies are part of the Falls Free© Initiative. Specifically, AOTA is promoting the role of occupational therapy in fall prevention.
What is Occupational Therapy (OT)?
Occupational therapist practitioners work with older adults in their homes or in facilities to do the day-to-day activities they want to do, safely. They perform an individualized evaluation, determine a person’s goals, help improve the person’s ability to perform daily activities, and evaluate if those goal have been met.
How does OT help in fall prevention?
The occupational therapist will remove environmental hazards in the home. They can suggest furniture arrangement so that there is plenty of room to walk without obstacles. If you hold onto furniture for balance, they will advise whether it is heavy enough to do that safely or suggest alternatives.
The therapist will review your entire home and be sure you can safely and easily get to the items you use on a regular basis. They’ll help create a plan for accessing things that are used most frequently.
The OT will evaluate the lighting throughout your home, making sure that you can see in potentially unsafe areas.
Occupational therapists will work with caregivers as well, educating them on proper patient transferring techniques, and providing proper guarding techniques while a patient is moving or managing stairs to reduce the risk of patient falls without
injury to the caregiver.
This 2008 video from University of North Carolina at Chapel Hill's Institute on Aging, offers advice on preventing falls and shows how an occupational therapist assesses potential hazards in the home.
Medicare often pays for occupational therapy if prescribed by a doctor. Speak to a medical professional to determine if an occupational therapist can increase your or your senior’s quality of life and perhaps reduce the risk of falls. I just wish they could fix potholes.
We know most seniors prefer to age in place, at home. In fact, according to AARP, over 90 percent of older Americans want to stay home as opposed to relocating to assisted living or nursing homes.
The challenge with aging in place is that unless the senior has a full time caregiver, they can wind up being alone most of the time. That isolation and inactivity can begin a downward spiral of depression and loneliness. Not exactly the picture of a happy way to age.
Senior care at home can also get expensive, especially if you’re paying for simple companionship. Paying a companion caregiver $15 per hour to sit and play bridge might be a bit of overkill, especially since most seniors live on a fixed income.
The National Council on Aging has designated September as National Senior Center Month, and the theme for 2014 is Senior Centers: Experts at Living Well — Discover, Play, Create, Challenge.
Not to be confused with Adult Day Care Centers which are more costly and offer a higher degree of structure and supervision, Senior Centers are facilities that offer a wide variety of activities and offer opportunities for independent seniors to interact. It’s perfect for the active elderly—those who would like a place to “hang out”, have fun, and maybe learn a little something new.
Senior Centers often offer classes, trips, parties, volunteer opportunities, and recreational activities, and lifetime learning programs, including expert lectures. A healthy meal can also be had for an additional minimal fee. Oftentimes, they provide opportunities for day- and sometimes even overnight-excursions.
Regionally, some senior center endeavors are pushing boundaries and giving area seniors a little extra this month.
- In Livermore, California, the California Highway Patrol will be offering a free public presentation on “How to Recognize Elder Abuse”.
- The Glastonbury, CT Senior Center are inviting seniors to take part in a 10-week fitness challenge that includes a variety of activities to make people more aware of their own health and well-being.
- The St. Clair Street Senior Center in Tennessee is featuring a Drum Circle, Tai Chi, St. Clair Walkers and an Art Show.
Some programs have been developed specifically to highlight this month’s senior center theme, but some communities see a great opportunity in working with local seniors.
In New York, for example, the Department on Aging is teaming up with local arts councils and the NYC Department of Cultural Affairs to present SPARC : Seniors Partnering with Artists Citywide. The initiative places 50 artists-in-residence at senior centers across the five boroughs of New York City. The goal is to produce arts programming for seniors in exchange for workspace and a small stipend. As reported by website Hyperallergic, last year, participating dance company De Novo staged Houseguest at the Martha Graham Center for Contemporary Dance and included seven seniors from the Astoria senior center where they had been in residence.
I plan on exploring this month’s theme by taking my own mother to a local senior center. Looking ahead to winter, it may be just the place for her to spend some time among her peers in the community. While I don’t expect she’ll be performing any contemporary dance moves, they might just get her to Zumba.