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March 15th, 2011
12:01 AM ET

Report: Alzheimer's caregivers suffer as well

Caregivers of people with dementia provide 17 billion hours of unpaid care a year, at an annual cost of $206 billion, and all of this work and dedication is taking a toll on their health, according to the 2011 Alzheimer's Disease Facts and Figures,  an annual report of the Alzheimer's Association.

"The caregivers are going to suffer as well with decreases in their quality of life, decreases in their own health and often shortening of life span," says Bill Thies, chief medical and scientific officer for the Alzheimer's Association.

Has Alzheimer's touched your life? Share your story

In a little less than a decade,the number of caregivers for people with dementia has risen to almost 15 million – a 37% increase. And the around-the-clock care often means caregivers have little time to look after themselves. They put off doctor visits when their health starts to fail and forgo preventive care, skipping physicals and routine screening tests. And about a third of family caregivers have symptoms of depression, according to the report.

5.4 million Americans suffer from Alzheimer's and the numbers are expected to increase to 16 million by the middle of the century. Most of the cases are seen in people 75 and older, but the disease is not a normal part of aging. People who develop symptoms later in life usually live an average of four to eight years after diagnosis, but some survive for as long as 20 years.

There are things families can do to help with the burden of years of caregiving.

"Number One, learn about the disease. Families that understand the disease process cope much better," says Thies.

It helps to know that when a loved one starts to change and display odd or uncharacteristic behavior, that it’s the disease speaking.

There also are key behavioral strategies and routines that people can learn to help them distract or redirect some of the erratic or delusional behavior of patients.

"Also understanding that no one can deal with all the requirements of being a caregiver through all of the stages of Alzheimer's disease. You are going to have to have help," says Thies.

Day care for patients, services such as Meals on Wheels and home health care can help. And if families decide that the disease has progressed to the point of needing nursing home care, the Alzheimer's Association can assist in finding a facility.

There is no cure for Alzheimer's and no available treatment can stop the destruction of brain cells that leads to the progression of the disease. Some drugs can slow the worsening of symptoms but they work in only about half of patients for an average of 6 to 12 months. Six new drugs are in late stages of clinical trials but researchers won't know for two or three years which are effective.

From 2000 to  2008 death rates declined for most major diseases such as breast and prostate cancer, stroke, heart disease and HIV/AIDS, but for Alzheimer's, the rate climbed by a staggering 66 percent.


soundoff (35 Responses)
  1. txun

    I am 34 yrs old and I was taking care of both my grandparents who lived with me.
    My grandma had Alzheimer's disease and my grandfather had rectal cancer. I know
    the difficulties in taking care of just one but I had two. I suffered alot of stress that
    eventually caused a stroke. I did'nt suffer long term damage but with no one else helping
    me in my family the damage was more emotional even now that they are gone.

    March 15, 2011 at 09:57 | Report abuse | Reply
    • Mike

      I'm 42, I moved back home when my Mom was diagnosed. I lost my job because I have to take care of my Mom. The State says my Mom gets too much retirement for us to get ANYTHING. She isn't ready to "be put in a home" her words. Yet, I don't know what I can do. I cashed out my retirement savings already. And we're flat broke.

      March 15, 2011 at 11:13 | Report abuse |
    • Delphin

      Mike, please don't sacrifice your retirement savings! Sometimes you have to "put them in the best home you can find." Unless you can hire a nurse to come to her home to care for her, using her money, not your retirement savings, you might have to go against her wishes. It's not worth the loss of your life-savings.... is it?

      March 15, 2011 at 18:11 | Report abuse |
    • iggie75

      Just wanted to pass something along that happened to us recently. My father has Alzheimer's and is in a nursing home in our town. Last week I got a call that he had broken the temples of his glasses. Long story short: I have no idea where he got them or the exam, and now that it's been over a year since he got them, no way to get another set made. When doing your planning ahead of time (powers of attorney and such), be sure to ask your loved one for that information, and if you can afford it, perhaps get a few sets made with a durable inexpensive frame. I foresee my father without glasses in the future, sadly, as I have no way to replace them and he's unable to communicate well enough to go through an eye exam. Also get dental information from your loved one.

      April 19, 2011 at 06:08 | Report abuse |
  2. JT

    Betsy, you are a SLUG. Crawl back under your rock and enjoy your free samples. Maybe they'll send you a coupon for some compassion and class...but alas, you'd probably just eat it.

    March 15, 2011 at 10:51 | Report abuse | Reply
  3. Kristal

    my beloved mother suffers from this dreaded disease' no need correcting their thought process as their mentally incapable of some things but every now and then there is clarity of mind its not much but its something and the jibbish that comes out of their mouths is frustrating but its something and the helplessness when there home but say i want to go home its very sad when You love them. God blessed myself and my family for giving us a loving'caring mother mAY her end which i will forever regret be swift' I LOVE HER SO MUCH

    March 15, 2011 at 10:52 | Report abuse | Reply
    • NoNewInformation

      God bless you, Kristal, and your precious Mother as well! I'm suffering for my beloved Mother, too. I know stress caregivers go through and the fear for their loved ones' future. I think it's so sad that this disease has been recognized at least since 1906 and we have no more new information or progress to report than that found in this article. Honestly, do they really think for a moment there's ANYONE out there who has every dealt with a loved one with this disease that hasn't already figured out that caregivers suffer, too? Wow! That high-powered new information sure does help! As a caregiver yourself, you probably already also have found that you get so discouraged and so depressed that you sometimes have to laugh at the lack of information, and even wrong or misleading information, to keep from crying! There's not much else you can do except pray a lot and join in discussions like this with other people who are actually going through similar experiences to share thoughts on coping with this horrid disease. They often know more than they're given credit for - from firsthand experience. All the best, Kristal!

      March 15, 2011 at 11:13 | Report abuse |
    • Mike

      Yeah, people ask me how I can sit there and answer the same questions over and over again, day after day and not lose what's left of my mind. All I can say is, she's my Mom. Me taking care of her now is no more then what she did for me when I was 3 and 4 year old. Just the questions she asks are more sophisticated.. sometimes

      March 15, 2011 at 13:24 | Report abuse |
  4. NoNewInformation

    Folks, who learned anything new here???

    March 15, 2011 at 10:55 | Report abuse | Reply
  5. NoNewInformation

    Mike, God bless you, too. Caring for my Mom is taking its toll on my job, not so much due to taking her to numerous doctor appointments, etc,. but mainly because I've also spent a year and a half going to court against my brothers to get the assets in Mom's home for own her personal care. My younger brother constructed an IED in Mom's home. Up to that point she was doing well in her own home with a little in-home health care. They quit after that, though! The other brother was perfectly satisfied allowing this brother and a male friend live there at Mom's expense during that time. Now that the home is going to be sold, maybe Mom can stay in assisted living longer. I love her so much and want her to live as normal and independent a life as she possibly can. My retirement account is out $18,000.00 due to the legal expenses. I know what you're going through, and I wish I could be of more help. You might want to find out if your Mom could qualify for VA Aid and Attendance if your Father was in the service. Best wishes to you and your Mom.

    March 15, 2011 at 11:35 | Report abuse | Reply
  6. becca

    Yes, it's so sad. My mom is trying to take care of both her parents and aunt who are all in their nineties. Her mom has dementia and dad has tramatic brain injury from falling often and hitting his head. She is working full time and trying to do everything possible to take care of them without it affecting her health too.

    March 15, 2011 at 12:22 | Report abuse | Reply
  7. Josh

    My father suffered from Alzheimer's. What he lost, was any understanding of time. And it was not just yesterday vs. tomorrow, but putting his own memories in order.

    I have to say, some of this was beyond my own understanding. For example, I could not understand how he could think I was still in high school while also knowing that I, myself, had grandchildren. I mean, he would ask me how school was going, and then ask how my grandkids were doing.

    This did help when his wife died. While he knew it happen, to him it was like it happen years ago; even the very next day. This was a comfort to me, because I was initially worried that I would have to break the news of his wife dying to him, every day.

    Though, I can add that he remember each of us, by name, to the very end.

    March 15, 2011 at 12:34 | Report abuse | Reply
  8. MARLENE JONES

    My husband & I took care of my mom for 6 years with alzheimers. I worked full time during the day & my husband worked nights full time. I really didn't know that much about the disease so was in for rude awakening when I researched it. We kept her at home and it was just us who cared for her. It drained us mentally, financially & emotionally. My mom died August 3,2009 @ 93 yrs. I miss her every day. I love her so much and I would do it all over again if I had the chance.

    March 15, 2011 at 12:47 | Report abuse | Reply
  9. Jimbird3974

    The hardest part of caring for an Alzheimer's patient is dealing with everyone else. Social Security and Medicare is bad enough, but family member who believe you somehow caused this, friends and family who won't answer the phone because they are afraid you will ask for help, other people who nicely remind you that you have to move on with your life, are you going to get date or get married again. My kids and I took care of my wife for two years at home until we had to place her in a home in October 2010. During those two years, no family member or friend ever came to visit her, but they had plenty of advice. She is 60 years old and I am 52. I would give any caregiver one piece of advice. Accept the fact that the person you love is gone and remember that. What you are dealing with now is only a shell that you can never penetrate. Until you understand and accept, you will only drive your crazy with stress and guilt.

    March 15, 2011 at 12:49 | Report abuse | Reply
    • Jackie Cerqua

      I know exactly how you feel. My husband's family stays away and never calls. At least they do not call me... they call the facility and I have stpped any information going out of there.... Yes, the person you knew, the person you married, the person you have lived with for years is no longer there.. they are gone! Only once in a while Vinnie, my love, remembers something.. His memories are of the beginning of our relationship... our first date, and things we did when we were first married. OK, I can live in that time too. I thought I would have all those memories myself, and he would not remember anything.. but he does... there will be a day when he won't, but I am writing down all the funny things he is saying and all the times when he is silent... I will always remember because I write them in a journal....
      Stress and guilt are two killers..... depression iis another thing that we feel.... but if you can look at the person, go to their world and live there for a while, do that......because they can never come into ours.... you might, yes, might be OK...
      Take care of yourself too.... remember, if anything happens to you, who will care for your loved one..?

      March 15, 2011 at 18:25 | Report abuse |
  10. JudgeSmails

    I might have Alzheimer's, but at least I don't have Alzheimer's.

    March 15, 2011 at 13:13 | Report abuse | Reply
  11. DoubleA

    We cared for my father-in-law for nearly 4 yrs., draining our retirement to allow my husband to stay at home with his Dad. During that time we had a beautiful baby boy... I teased my husband, calling him Alfred to Captain Alzheimer and Kid Seizure! Our son is profoundly affected with Epilepsy and Autism. At nine he still is non-verbal, not toilet trained, and can not dress or feed himself. We have been changing someone’s diaper for the entire 10 yrs we've been married.

    As my husband ages I see small things that he does or says that just makes my blood run cold. My worst fear is my husband getting Alzheimer’s. I fear beyond words the idea of caring for both my son with Autism and my husband with Alzheimer's. I've found a group who has residential homes that I'm working with – I know that at some point our son will have to be placed outside the home. We laugh that maybe they will cut us a deal – buy one – get one free on rooms and care.

    My husband will give me hugs and tell me he loves me and he's sorry out of the blue. The first time he did this I asked him what he had done – he said; "Nothing honey, I'm banking them. I love you and want you to remember this moment, because if I end up like Dad I'll not be able to tell you I'm sorry I peed on the couch or threw my dinner plate at you!"

    To those caring for a loved one, may you find peace and rest for your weary souls.

    March 15, 2011 at 13:57 | Report abuse | Reply
  12. LTZ

    My mom had alzheimer's for over 9 years and passed away in June 2010. When the neurologist confirmed what I had already suspected, I went home and cried as I knew I was going to lose my mom who was my best friend and mentor. My father had a tough time coming to terms with my mom's condition. However, he never left her side. He would pray day and night for a miracle which of course was not going to happen. He died two years ago on Valentine's Day due to the stress he endured because of her illness. His heart gave out. I was an emotional wreck as I had to juggle work, my family and my mom. We never told her he had passed as she no longer spoke and was bedridden and was afraid at what it would do to her if we said anything. We moved her in with us and in April of 2010 she had a terminal bed sore and had to place her in a nursing facility. Many people didn't visit but were quick to throw me under the bus for making that decision. No one wants to put their loved one away but it was not possible for her to be at home. Had to make decisions based on logic and not emotion. It was the worst three months of my life seeing my mom disintegrate and felt so helpless as there was nothing we could do but make sure she was comfortable until God was ready for her. I only hope I made the right decisions.

    March 15, 2011 at 14:13 | Report abuse | Reply
    • DoubleA

      Liz, please don't second guess your decisions. I've learned one thing over the past 10 years, we caregivers make the best decisions we can given the knowledge and resources (and maybe sleep) we have at any given moment. Period!

      Waving at you from under the bus! Been there – know exactly what you're saying!

      I'm sorry for your loss...

      March 15, 2011 at 15:45 | Report abuse |
    • Jackie Cerqua

      You are not alone under that bus! I know of many people who have had the same thing happen to them.... Do not feel guilty... you did all you could ... We say .."there is aline in the sand and when we get to that line, we must make the dicision to step over it and place our loved one, or stay behind it and contiue to cre for them ourselves."... i have seen too many people break under the stress of caring for a loved one.. that when my turn came a the line.... i stepped over it right awsy.. Vinnie is in a facility 16 months now.. and I still hear rrom family, :He's OK, right" "he still can talk, right?"
      I guess people think it is catchy..... NO IT IS NOT.....

      March 15, 2011 at 18:34 | Report abuse |
    • NoNewInformation

      Liz, I agree with DoubleA. Please don't second guess your decisions. You obviously loved your Mother and you made the best decisions you could given the knowledge and resources (and maybe sleep) you had. They were far too little anyway. New information is exactly what we need. Don't put yourself down, and don't let anyone else, either.

      I'm very sorry for your loss...

      March 15, 2011 at 22:54 | Report abuse |
  13. reetch

    Nuedexta helps with uncontrolled crying and laughing in Alzheimers patients. See your doctor and ask about precribing Nuedexta.

    March 15, 2011 at 14:16 | Report abuse | Reply
  14. Shawn D

    Mom is 80, Dad 90, Mom has dementia/Alzheimers, Dad is failrly healthy My parents live 100 miles one way, in the country. I drive up to my parents every Wednesday after work, every weekend and any other time that is needed for doctor appointments. and any other major decision that is needed. I have a brother that is not much help. I am a registered nurse and work full time and, I'm finding caregiving can suck the life out of you before you know it. I found that out the hard way, that you the caregiver really need to be taking care of yourselff, because if your not able, who will take care of mom and dad. I have have a great employer and have used FMLA to protect my absences, which has help ensure that I have a job when I have miss work when a parent has been hosptialized . My dad keeps saying he is just not ready to place mom in an assistant living facility for Alzheimers patients So in the mean time, I'm trying to make due the best I can, It's hard not to become bitter or resent , that all my free time is used for caregiving and putting stress on my family and career, but that is all part of it. I would go to the moon and back for my parents, as they would for me. I say my prayers for strength and patience.

    March 15, 2011 at 15:27 | Report abuse | Reply
    • NoNewInformation

      I'll say my prayers for strength and patience for you, too, Shawn - and also for me. Lord knows we need plenty of both. I love my Mom, too, and I would do anything in this world I could for her. She'd do the same for me!

      March 15, 2011 at 23:00 | Report abuse |
  15. Suzanne

    Thank you for reporting on this important story. But please, CNN, stop using Alzheimer's Disease and dementia interchangeably. Alzheimer's is the most commonly diagnosed form of dementia, but not all dementia is Alzheimer's. Different types of dementia may start or occur in different areas of the brain, strike at different ages, and present with different symptoms. Frontotemporal Dementia and Pick's Disease, Vascular Dementia, Dementia with Lewy Bodies, and others–they are all heartbreaking and terrifying to witness, and all take a horrible toll on caregivers . The Alzheimer's Association was careful enough to note the distinction in their report, so please do this as well. Anyone with a family member with any type of dementia suffers, and we need this to be adequately recognized.

    March 15, 2011 at 15:38 | Report abuse | Reply
  16. Delphin

    If you have to place your loved one in a "home," please don't let anyone, and I mean anyone, who was not constantly visiting and helping out with the care, place a guilt-trip on you. There is no reason to feel guilty. Make the best decision you can for both them AND you.
    Love and peace.

    March 15, 2011 at 18:20 | Report abuse | Reply
    • NoNewInformation

      Thank you, Delphin! If your family won't help you, then do the very best you can, and God bless you and guide you. We need our family most at a time like this. If they're not there for you, then....

      March 15, 2011 at 22:41 | Report abuse |
  17. Danyelle

    My dad is 87 and suffers from the disease. My step mother has taken care of him until her health began to fail. I feel so helpless, because I live in a different state. My step brother and his wife along with my stepmom's nieces look after them. I travel back home (5hr drive) as often as i can. I have a full-time job and sometimes its hard financially for me to go back home. I feel bad because i can't be there like i wish. I have thought about taking a leave of absence and take a withdrawal from my retirement to get me through. I get so depressed. I call home often, but my father doesn't know its me calling, my step mom is well aware.

    March 16, 2011 at 06:11 | Report abuse | Reply
  18. G-J

    I am 50 years old and caregiver for my 56 year old husband who has mild cognitive impairment (MCI) and lewy body disease. Together we are raising our son, a high school freshman.

    Being a caregiver is challenging, frustrating, heartwarming, scary, terrifying, enriching, enlightening, and many other things. I blog about our life on http://www.caregiving.com as G-J. At the website caregivers find and give support, and find the understanding they don't always receive other places.

    March 24, 2011 at 18:14 | Report abuse | Reply
  19. Courtney

    I'm 54 and have been taking care of my mom who suffers from Alzheimer's for the last year and a half. She's 77, and has her good days and bad days, but I am grateful that I have the time to take care of her, I work from home so my schedule is somewhat flexible. I've been reading lots of literature on Alzheimer's and just found out about a book that really focuses on the caregiver, it's called "Treating Alzheimer's, Preventing Alzheimer's" by Dr Isaacson. It's an easy ready, and talks about the caregiver's role in helping your loved one with Alzheimer's.

    March 31, 2011 at 10:54 | Report abuse | Reply
  20. bpeter

    there is new research on how music therapy programs can decrease stress of caregiving, and we have tried this. there is great power in music for relaxing the mind and helping to reduce anxiety and depression – this article I found on http://www.musictherapyformemory.com/research.php on "Impact of music therapy on anxiety and depression for patients with Alzheimer's disease and on the burden felt by the main caregiver" talks about the new research.

    March 31, 2011 at 10:55 | Report abuse | Reply
  21. Bob Elliott

    My wife (Jennie) is 74 and has mid-stage alzheimers, she will not eat, take her medicine etc. I am 80 and have cirrhosis of the liver...from 5pm until 9am I am alone and whatever needs my wife has, I DO IT.!!! Jennie has one daughter who lives about 60 miles away. I could use help from her but she never volunteers! (I am her step-father) We have a caregiver from 9am until 5pm. I can tell you that it is so hard on me and I get so frustrated with her daughter I almost despise her. I don't think it's unusual to feel that way. I know there are others out there who have this problems with siblings who will not help...I feel for those who are in the position that I am in...My God Bless each and every one of you/

    April 27, 2011 at 14:20 | Report abuse | Reply
  22. seo

    We stumbled over here by a different website and thought I should check things out. I like what I see so i am just following you. Look forward to finding out about your web page again.

    January 31, 2012 at 12:55 | Report abuse | Reply
  23. KSue

    I am taking care of my 79 y.o. mom. My stepfather passed away in 2010 and my brother passed away in 1992. I am the only person taking care of my mom. I check in on her during my lunch hour and after work. She can become combative and agitated easily. She verbably abuses me and is extremely paranoid. It's a daily battle to have her take her medication. She refuses to have an outside person check in on her or go to an assisted living facility as she thinks that there is nothing wrong with her, it's me, I'm the problem. I have also put my health on the back-burner trying to take care of her medically, paying her bills and trying to take care of my own life. It's very overwhelming and I have no help and work full time. What's really frustrating is that even though she is mentally unable to make proper choices for herself, the law (in CA) says that if she doesn't want to go to an assisted living, have a caregiver or if she doesn't want to take her medication, she doesn't have to, BUT, I am told by her doctor that I must take care of her and "be the parent" as she is unable to do it herself. I can't make those decisions for her. I feel like I'm stuck between a rock and a hard place. Reading some of the other posts, I am not alone.

    March 21, 2012 at 19:37 | Report abuse | Reply
  24. Cole Tajiri

    Assisted living as it exists today emerged in the 1990s as an eldercare alternative on the continuum of care for people, for whom independent living is not appropriate but who do not need the 24-hour medical care provided by a nursing home and are too young to live in a retirement home. Assisted living is a philosophy of care and services promoting independence and dignity.,::;

    Most current content on our blog page
    <http://homeimprovementstuffs.com

    June 8, 2013 at 03:02 | Report abuse | Reply

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