Posts Tagged Dementia
It’s November and of course that means that the holidays are just around the corner, but it also means that it is once again National Alzheimer’s Awareness Month. You may see familiar buildings in the greater Denver area lit in purple to remind people that the quest for a world without Alzheimer’s is more determined than ever.
Much has happened since my blog entry last November. All very positive, by the way. I appreciate this opportunity to update you on many things that are happening in the field of Alzheimer’s/Dementia. As a reminder, the reason for my passion and commitment around this subject is that three of our four parents were diagnosed with Alzheimer’s disease within a year and a half of each other, and they lived for 16, 14, and 11 years with the disease. Although we lost our last “Lovie” four years ago, I remember vividly those many years of caregiving and how challenging it was to juggle work/life balance issues.
I have been with MINES and Associates for six years now and present a lunch and learn session called Alzheimer’s/Dementia A to Z to our client groups. I am seeing attendees of all ages in the sessions and because we always end the presentation with an explanation of the twelve things we can all do at any age to reduce our risk for dementia or delay its onset. I am seeing more and more young people taking an interest in brain health. I am also seeing an uptick in employees seeking coaching on the topic of Alzheimer’s/Dementia through the Employee Assistance Plan benefits that their employers provide.
One thing is for sure. Going it alone while trying to care for someone with dementia is never recommended. Our community offers a variety of resources to family care partners and I will talk about some of them in this posting.
But first, a quick update on promising research! I continue to be the most optimistic I have been in years that a breakthrough is on the horizon. So much going on! One of the most interesting clinical trials is happening right here in the Denver area at the Rocky Mountain Alzheimer’s Research Center on the Anschutz campus. My good friends and renowned neurologists Dr. Huntington Potter and Dr. Jonathan Woodcock are now in Phase III of the Leukine trial. Leukine is a compound already approved by the FDA for bone marrow stimulation. The Anschutz clinic team discovered that it might have possible benefits for Alzheimer’s as well. Stay tuned – you may be seeing updates on the evening news about the great work being done here in our area. There are also other promising angles on how to tackle Alzheimer’s and other forms of dementia. Current thinking is definitely outside the box – many new cause and effect theories are now being explored by the medical and scientific community.
I spent a week in Washington DC in June this summer, representing the Alzheimer’s Association at our annual Public Policy Forum. Our group spoke with every member of Congress and I am pleased to report that we got the $425 million in additional research funding we requested. That will put the National Institute of Health’s Alzheimer’s research budget at $2.3 billion annually beginning in 2019. The National Alzheimer’s Plan that was written into law in 2010 calls for a prevention, treatment, and cure by 2025. Hope has never been stronger that we are going to meet that goal and get this fixed. By the way, when that finally happens, I will be throwing a party for the world so you will all be invited!
In the meantime, there is much work to do to educate, help, and support families who are living with Alzheimer’s and other types of dementia. The number one question I am asked is what is the difference between Alzheimer’s and dementia. A good way to explain it is to say that everyone with Alzheimer’s has dementia but not everyone with dementia has Alzheimer’s. Vascular dementia from strokes, Lewy Body dementia, and Frontotemporal dementia are other forms of the most common dementias. While Alzheimer’s accounts for approximately 65% of all cases of dementia, many primary care physicians may not be prepared to provide a specific diagnosis. Asking them for a referral to a neurologist or geriatrician can help a family learn what type of dementia they are facing with their loved one.
While there are no treatments that stop the progress of dementia at this time, there are some drug therapies that may help with symptoms in some cases to some extent for some period of time. Asking your specialist about these options can get a conversation started about what might be beneficial for your loved one.
Aside from the dementia coaching provided through the MINES EAP program, The Alzheimer’s Association provides a 24/7 helpline (800.272.3900) that family members can call regardless of what type of dementia their family is dealing with. This is a powerful resource tool for caregivers who have questions or simply need to chat with someone about behaviors, etc.
Another organization that I am involved with is also at the forefront of trying to improve the quality of life for those living with all forms of dementia and their family care partners. Dementia Friendly Denver is part of Dementia Friendly America, a not for profit, grassroots, all-volunteer initiative that was introduced at the White House Conference on Aging in 2015. Our volunteer team is working on eight projects in the greater Denver area and you can check them all out at dementiafriendlydenver.org. The goal of the projects is to make our community more dementia-friendly and to reduce the stigma surrounding the topic of dementia.
And please remember that you can still enjoy the holidays with family members with dementia. The key is to practice the “Holiday Lite” approach. Things don’t need to be extravagant or perfect. Make sure holiday activities and outings are short in length. Our Lovies wear out faster than we do. An hour for us is like five hours for them. And make sure holiday decorations that look like candy or food are out of the reach of those with dementia. Be prepared for upsets due to the disruption of routines during the festivities and provide rest periods for everyone!
So in closing, as we enter November and National Alzheimer’s Awareness Month, remember that you are not alone. Utilizing the dementia resources available throughout our city can help you get organized and knowledgeable. And most importantly, don’t forget to take care of yourselves. Respite care is available in our community and the Alzheimer’s Association can help you investigate options. Exercising, taking walks, meditation, and outings with friends can help alleviate the stress associated with being a dementia caregiver. Best wishes for a peaceful and enjoyable holiday season! – JJ
Thanksgiving is tomorrow and as such many of us are thinking of what we are thankful for in each of our lives. Good friends, loving family, and good health re: some of the common things that we find ourselves thinking of. So it is this spirit that MINES wants all of us to take a moment and thank the (sometimes thankless) caregivers that look after their loved ones who depend on them, often times sacrificing their own wellbeing in the process. There are countless reasons why one might become a caretaker or need a caretaker themselves but since it is Alzheimer’s awareness month we will focus on those that fall into the Alzheimer’s and dementia circle. About 15.7 million adult family caregivers care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]
Unsung (and unpaid) heroes
Given that a large percentage of caregivers are family members or friends of those that they care for, they are rarely paid or reimbursed for any of the time and resources that they spend caregiving. In fact, approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.] Not only do these folks go unpaid, they are often paying out of their own pocket for supplies, transportation, and lost wages due to missed work in the line of caregiver duty. Alzheimer’s and dementia are already ranked as some of the most expensive medical issues facing the US today, but with personal expenditures and lost wages for caregivers being hard to calculate exactly, this problem might be even worse than what the current stats say.
Who are they?
Despite their superhuman capacity for empathy, caregivers are normal people, and oftentimes do not have any formal caregiving training or background. They also come from just as diverse of backgrounds as that of the people that they care for. Typically, they are adults with the average age being 49.2 years old, with 48% of caregivers falling in between the ages of 18 and 49 years old. About a third of caregivers are older than 65. In terms of ethnicity, according to a 2015 survey, 62% of caregivers identify as White, while 17% identified as Hispanic, 13% as African-American, and 6% as Asian-American. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
Women and Caregiving
A very important aspect of the Alzheimer’s/dementia crisis is that women are right at ground zero. Not only do women face a 60% greater chance of getting Alzheimer’s or dementia, but upwards of 75% of all caregivers are female, and may spend as much as 50% more time providing care than males. [Institute on Aging. (2016). Read How IOA Views Aging in America.]
While women account for the vast majority of caregivers, they also make up a large percentage of the individuals being cared for. In fact, 65% of care recipients are female, with an average age of 69.4. The younger the care recipient, the more likely the recipient is to be male. 45% of recipients aged 18-45 are male, while 33% of recipients aged 50 or higher are male. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.] Much of this is due to the fact that Alzheimer’s and many types of dementia tend show up in women a much higher rate than men. Researchers are trying to determine what the reason is behind this. It was once thought that it was because women tend to live longer than men, but as the average life expectancy becomes closer this is being challenged and other factors are being considered.
Who are they caring for?
While many caregivers do so professionally, many make the leap into the role of caregiver in order to care for family or close friends. This group actually makes up the vast majority of caregivers with 85% of all caregivers caring for a relative or other loved one. Of these caregivers 42% are caring for a parent, 15% are caring for a friend or other non-blood related loved one, 14% for a child, 7% for a parent-in-law, and 7% for a grandparent-in-law. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
What are they doing?
There is no set job description for caregiving. The day to day tasks vary from one individual to the next depending on the needs of those they care for. It is estimated that 96% of caregivers are charged with assisting or completely taking over normal everyday activities such as shopping, cooking, picking up prescriptions, and so forth which adds up fast, leaving little time for the caregivers’ own needs. [AARP and United Health Hospital Fund. (2012). Home Alone: Family Caregivers Providing Complex Chronic Care.]
According to a recent survey, on average, caregivers spend:
- 13 days each month on tasks such as shopping, food preparation, housekeeping, laundry, transportation, and giving medication;
- 6 days per month on feeding, dressing, grooming, walking, bathing, and assistance toileting;
- 13 hours per month researching care services or information on disease, coordinating physician visits or managing financial matters. [Gallup-Healthways. (2011). Gallup-Healthways Well-Being Index.]
To make matters worse, many of the tasks are complex and often medical in nature. A recent report that talked about caregivers who provide ongoing chronic care, 46% had to perform medical and nursing tasks on a regular basis, sometimes without the ability to obtain proper training to perform the needed tasks. [AARP and United Health Hospital Fund. (2012). Home Alone: Family Caregivers Providing Complex Chronic Care.]
It is important to mention that Alzheimer’s and other dementia related disease call for some of the more intensive and long term caregiving commitment. Measured by duration of care, Alzheimer’s and dementia caregivers provide care on average 1-4 years more than caregivers caring for someone with an illness other than Alzheimer’s disease. They are also more likely to be providing care for five years or longer. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]
How can we support them?
Caregivers report having difficulty finding time for one’s self (35%), managing emotional and physical stress (29%), and balancing work and family responsibilities (29%) (NAC, 2004). About 73% of surveyed caregivers said praying helps them cope with caregiving stress, 61% said that they talk with or seek advice from friends or relatives, and 44% read about caregiving in books or other materials (NAC, 2004). If you find yourself close to someone who is providing care for someone and you’d like to help out, keep in the mind the best way that you can help is to stay out of their way and instead go do daily tasks that they do not have time to do themselves such as shopping, picking up kids from school/activities, or offering company when they do get the rare moment to themselves. But remember if they just want to be alone make sure to give them the space they need to unwind.
So with all this in mind it’s easy to see that we should all be thankful to the caregivers in the world. Many people would be suffering even more without the time and personal sacrifices made by these special people every day. So this holiday season everyone at MINES says THANK YOU CAREGIVERS! Thank you for everything you do!
To Your wellbeing,
The MINES Team
Sources and Resources:
November is National Alzheimer’s Awareness Month and National Caregivers’ Month. One of the first questions I am asked when I speak or teach on the topic of dementia is, “What is the difference between Alzheimer’s and dementia?” The most logical answer is that everyone who has Alzheimer’s disease has dementia, but not everyone with dementia has Alzheimer’s disease.
Prevalence and cost
Alzheimer’s disease was discovered by Dr. Alois Alzheimer in 1906. It is a brain disease that causes difficulties with memory, thinking, and behavior. 5.4 million Americans are currently living with Alzheimer’s, and more than 15 million caregivers are providing their care. Alzheimer’s accounts for approximately 70% of all cases of dementia and one in 9 Americans will develop the disease past the age of 65. With 10,000 Baby Boomers turning 65 every day in our nation, Alzheimer’s is a topic that cannot be ignored. Nearly half of us will have Alzheimer’s at age 85 and it is currently the country’s 6th leading cause of death. Unfortunately, it is the only disease in the top ten that cannot be slowed, treated, or cured. Aside from the heartache of Alzheimer’s, it is also the most expensive disease in the US, costing the federal government $160 billion each year for patient care.
Women and Alzhiemer’s
Women are at the epicenter of Alzheimer’s disease. According to the Alzheimer’s Association, a woman past the age of 60 is twice as likely to develop Alzheimer’s as breast cancer. Two-thirds of Alzheimer’s caregivers are women and 2/3 of Alzheimer’s patients are female. The scientific community used to connect these numbers to the fact that women live longer than men, but now new studies are being conducted to determine if there is more than longevity involved in these gender statistics.
Hopefully by now you are alarmed but not despondent about the stark facts regarding Alzheimer’s. There is hope! Record numbers of clinical trials are underway, including four that address prevention. While Alzheimer’s cannot be prevented at this time, doctors and scientists are now convinced that lifestyle may play a part in reducing risks or delaying the onset of the disease.
There are things you can do
Here are ten things that the Alzheimer’s Association suggests you can do to “Love Your Brain”:
- Break a Sweat – Exercise can reduce the risk of cognitive decline
- Fuel Up Right – Follow a balanced diet high in fruits and vegetables and low in fat
- Follow Your Heart – Avoid risk factors for cardiovascular disease like obesity and high blood pressure
- Buddy Up – Support your brain health by engaging and socializing with others face to face
- Hit the Books – Take a class – formal education may help reduce the risk of cognitive decline
- Stump Yourself – Challenge your mind – play games of strategy and speed
- Mind your Mind – Some studies link depression with cognitive decline making it important to seek treatment and reduce stress
- Catch Some ZZZs – Not getting enough sleep may result in problems with memory and thinking
- Butt Out – In addition to other health risks, smoking increases risk for cognitive decline
- Heads Up – Wear your seat belt in the car and use a helmet when playing sports or riding your bike
While there is no guarantee that doing the above things will prevent you from developing Alzheimer’s disease in your lifetime, these things may help reduce risk or delay onset. And…they make good sense for overall health!
Resources are available in our community. The Alzheimer’s Association is the nation’s leading voluntary health organization in Alzheimer’s care, support, and research. Visit http://www.alz.org for a variety of good information regarding Alzheimer’s. A 24/7 helpline is also available at 800.272.3900. All services are provided at no cost to families living with Alzheimer’s disease and other forms of dementia.
Reach out, we can help
And remember to use your Employee Assistance Program benefits from MINES and Associates when the stress of caregiving for someone with dementia becomes overwhelming. Caring for yourself is key. You owe it to your family to stay healthy in order to achieve the best quality of life for both you and your loved ones with dementia. MINES and Associates also provides workplace lunch-and-learn sessions regarding Alzheimer’s/dementia.
During November, make a point of learning more about Alzheimer’s and encourage your friends and family to do the same. There is reason to be optimistic that a breakthrough will occur. In the meantime, take good care of your brain and reach out for caregiving help. It’s the smart thing to do!
To Your Wellbeing,
MINES Affiliate and Alzheimer’s/dementia Expert