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Caring for a Loved One with Dementia or Alzheimer's Disease

Home Instead expert, David Troxel, discusses how companionship and friendships are the best treatment for Dementia.

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Many family caregivers presently care for a parent or spouse who is suffering from some form of dementia. In fact, the frequency of dementia increases with rising age from less than 2% for 65-69-year-olds, to 5% for 75-79 year-olds and to more than 20% for 85-89 year-olds.

Caring for a relative with Alzheimer's disease is particularly challenging because the disease is progressive and, eventually, completely debilitating. The person receiving the help may not be able to appreciate or acknowledge it or may even be verbally or physically abusive. Caregivers often have a hard time dealing with the fact that their loved one eventually may not recognize them.

"Caregivers of senior relatives or spouses with Alzheimer's disease and other forms of dementia are at great risk of suffering from depression, anxiety, frustration, stress and anger," warns Richard Schulz, Ph.D., caregiver stress expert at the University of Pittsburgh. Research shows that caregivers of a family member with dementia face particularly stressful demands because of the length of period of care, the behavioral and cognitive problems associated with dementia, and the extreme impairment of patients with end-stage dementia.

"Caregivers of patients with dementia should be particularly vigilant about their ability to deal with the challenges they face and seek assistance early in their caregiving role, as the disease is just beginning," advises Dr. Schulz. "It is also important to speak to the senior about his or her wishes before they unable to make important decisions.

In order to better care for a relative suffering from severe dementia or Alzheimer's disease, the following tips are recommended:

  • Understand the disease. Read about the disease, its affects, etc., so you are prepared as it progresses. With this understanding also comes additional patience, as you realize that the person is not doing this on purpose or to make you angry. It is a medical condition.
  • Enter their world. Instead of trying to correct a person with Alzheimer's disease, ask them simple questions about their statements, even if they seem strange or are about a person who is no longer living, etc. This will make you and your relative less frustrated.
  • Strike a balance. Encourage as much independence as possible. Help the person by prompting or cueing them to do things for themselves, when possible, but realize you'll need to step in if your relative's safety or well-being will be compromised in any way.
  • Get support. Enlist the help of family and friends to spend some time with your relative, if possible, to give you respite. Join a local support group for people who care for those with dementia/Alzheimer's disease to hear their stories and know you aren't alone.
  • Tap into resources. Find professionals in your area to assist with practical, yet emotional tasks, such as making senior care decisions, elder law issues/Power of Attorney, asset management or creating a will.
  • Decide on assistance. Family caregivers often find they are spending quantity time vs. quality time - doing the shopping, taking the relative to appointments, cleaning, vs. spending time with their relative. Enlist the help of a professional caregiver for the everyday tasks, so you can spend time with your loved one and appreciate them.
  • Environmental distractions, such as street noise, a loud television or radio, can lead to agitation or anxiety. It is important to make a positive and comfortable environment.
  • Use effective communication when speaking to someone with Alzheimer's disease or dementia. Be aware of your rate of speech, your pitch and tone.
  • Use positive body language. Greet the individual with relaxed facial expressions and shoulders. If you are tense the person with dementia or Alzheimer's disease may pick up on it.

The more you know, the better your loved one's care will be. Free online training and expert tips at HelpforAlzheimersFamilies.com

Last revised: April 12, 2010

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Thoughts and stories from others
  1. June 7, 2011 at 4:35 pm | Posted by GayeLynne

    My Heart goes out to each and everyone of you. My only words of wisdom to everyone is to Love everyday you have with your loved ones. Hold on to them good memories. If you can spend the money get someone like my self who Loves people and treats them with all the love they need. Hire a Home health care person to come lift off a lot of the stress you are all going through. In the long run you will be so glad you did. take time out for your self because you need it and deserve it. Dont ever feel you are selfish. I too am going through many things in my life that each and everyone of you are going through with my parents, They are both getting older and my mom forgets to take her meds and gets so forgetful thats its scary. I love both my parents very much and do everything for them I would not have it any other way. honestly I have workrd in Long term care and have seen many aids not do there job well. So I would have to take it upon my self to care for them so that they were comfortable. In return it made me feel good knowing that when they were well cared for I felt good inside. I Love my mom and dad with all my heart and could never put either one in a home but don't get me wrong sometimes you might need to and Please dont feel Bad. Its just you need to do whats best for you.And if the time comes upon any of you out there my heart goes out for you because its going to be one of the hardest things you ever did in your life. And my god give you the helping hand your going to need. Trust in him and ask for his hand he will be there for you and so will all of us. I hope some of my words are helping anyone needing a little advice. Because I'm a nursing student who loves to help people. I treat the elderly like they are my own grandparents because this is how someday I want to be treated. My Heart goes out to Each and Everyone of you. May God and all of us be there for you when you need it.

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  2. May 2, 2011 at 5:36 pm | Posted by Pat Ebersol

    Dear Barb, I understand what you are going through. I went through a similar experience with my husband. I was the only caregiver and had no help. I couldn't leave him alone, he would moun all night, when I asked what was worng he'd say nothing; stop for a while and start again. I got little sleep. It was very tireing. I Loved him and couldn't think of sending him away. I only need some rest at two hours a day, but I had no one. He's gone now. I lost him five months ago, and miss him very very much. If I could do it all over again I would and Love him just as much if not more. Perhaps what you need is someone to sleep overnight two or three nights a week to help you out and two days a week during the day. You will be surprised how much better you will feel by getting some rest and knowing that your mom is being well taked care of. It's just a thought that I am sharing with you since I've been there myself. God Bless you and all of your efforts.

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  3. April 28, 2011 at 1:15 pm | Posted by Rosie

    My husband has been diagnosed with vascular dementia. Medication has helped to slow the progression. However, he has become fixated on health issues and continually orders supplements online. His doctor has reviewed these pills and has allowed him to take some, but not all. The problem is that once we return a shipment, he then reorders the pills. I don't know how to stop this.He also has been targeted by political groups asking for donations, sending survey forms which he gladly fills out, and scaring him with extreme political positions. Can this be stopped?

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  4. April 22, 2011 at 8:48 am | Posted by Karen Pruneau

    My husband was 50 when he had his stroke which left him with mild dementia. he refused to accept the stoke diagnosis for months, and refused all mental rehab. So he is now at home staring into the computer all day. He blames everyone else (including the computer) for anything that goes wrong. Are there any groups for children, (not adult children) of people with dementia. We have two boys 12 & 14 and a soon to be 9 yr old girl. They ALL are getting upset with him, with the very stupid comments he makes or the way he blames the computer for doing stuff, or says he doesn't know who did something when it is obviously him.

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  5. March 22, 2011 at 3:05 pm | Posted by Jean Jensen

    My husband is 81 years old and has Alzheimers. He recently had a small stroke or TIA and was found to have a prostate infection - not cancer. He was diagnosed with the memory problem 3 1/2 years ago. He's been living at home but the last 6 months have become more and more impossible. He was always a "worker" but now he doesn't know how to hang a picture, trim a bush, keep his desk or closet in order. He gets angry at almost everything I say, even trying to get him to sit down and rest. The problem?? He thinks he can do anything and everything as he always did years and years ago. Last week I put him in a beautiful respite care facility. He hates being there and blames me for putting him there. He says he doesn't need care and he can take care of himself. That I just wanted to be rid of him. He insists he's not like the rest of "these people". Some of you talk about guilt - he lays the guilt trip on me daily. Meanwhile, my heart is breaking. My own health and well being are suffering. I don't know if I should "tough it out" and leave him there, or bring him home and try and do it myself again. Sooner or later he's going to have to be there full time anyway. I just don't know what to do or where to go at this point. I do know that I need a support group of some kind - and soon.

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  6. March 15, 2011 at 10:34 am | Posted by lue

    Thank you so much for your thooughts. My husband has AD and I am his sole caretaker. It really helps to know some of the symptoms, problems and solutions of others. I don't feel so alone. It helps me cope.

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  7. January 28, 2011 at 3:03 pm | Posted by Leslie

    My parents were in a car accident last year and my mom died. Dad had a brain injury and doesn't remember the accident. He did at first, but now he doesn't remember a lot of things. He keeps asking for his keys, car, mail, finances. Doesn't really remember where he is (he's in a lovely personal care home). Its very hard seeing him like that when both my parents (mom was 73 and dad is 84) were so active and vibrant - working and volunteering part-time, golfing and curling. I think the worst is that we haven't grieved as a family with my dad. He asks where mom is and that he had recently spoken to her. But we find other things to talk about and take turns going to visit him, but its the "after the visit" part that leaves you a bit depressed. But kudos and love to all caregivers - we hope to have people like that in our lives when we reach that time of our lives.

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  8. January 21, 2011 at 1:20 am | Posted by Sandi

    Reading the blog entries I have felt a peace that I am not the only one ~ I have taken many classes regarding alzheimer's and have also shared my wisdom with others that are in my "same boat". I have found out many things about myself while caring for my mom who has alzheimers, namely I can teach better than I can do. I know that I need to take care of myself as a caregiver but the reality is ~ when???? mom has come to live with me and my husband, (that is another learning lesson for me) I have for so many years looked at my husband and compared him to other men and wanting him to be more like them, how shallow of me! He is showing me his true charcter as he takes care of my mom (when my siblings are not).; which allows me to continue to work.We have just received a call that mom is next on the list for a facility. I am freaking out... as mentioned other blogs, I feel guility for being excited that I may get my life back on the other hand, I look at my precious mother (who I now think of EVA not my mom) and think ~ how can I let her go. Then the anger comes in that I have a brothe and sister that is not losing sleep over this... when did I become an only child. Enough of the pitty pot, I wouldn't trade any of my times with my mom for a moment of "my time" . I trulu believe that I am the one that has been blessed and that my brother and sister have missed out. I almost feel sorry for them. But I still hurt for my mom...I don't knowhow I am going to transition my mom from our house to a long term facility but I know God knows and I ma having torest in His arms for that one.I don't know how any caregiver gets through this without God... if you are trying this without him, trust me you need him as your higher power, the one to give you strength, wisdom and guidance.i would be interested in anyone sharing with me their experience on how they moved their mom from their home to a facility. My mom is not an angry person, she is a sweet person and has just been rated a 5 on the mini mental exam (she rated an 11 on 11/1/10) so I know it is not going to get "better" and that the time is precious.Thanks for this blog... I feel better already.

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  9. January 18, 2011 at 11:54 pm | Posted by ROSE

    My husband and I have been married for 22 years. Both of us were married before and he has three children and I have three as well. We live in a small town and for 11 years we worked side by side. My husband just turned 78 and I am 72. Eight years ago my husband had a TIA which affected his short term memory. He continued to have mini strokes but they were silent. We sold our business but continued to work together until my husbands memory glitches became cause for concerne and he retired. Prior to the strokes he was very active, flew airplanes, rode a Motorcycle almost everyday and was very easy going. We had a good relationship. He never uttered a cuss word, was positive, fun, and very very sweet. And he has always worked from the time he was big enough to do so. The retirement was hard for him to take and he became depressed. We went for help. We found through testing and with a Neurologist that he could only grasp about 3 to4 words out of ten and he had had numerous silent strokes not just the few we thought. They put him on Aircept, and drugs to calm his anxity down, but little seem to be helping. He could not remeber things and could not follow a conversation.If I wanted to tell him something I had to go back to Adam and Eve so he would know what I was talking about. The Therapist told me I needed to slow my speech way down.In Sept 2010 he had his first real stroke, and was in the ICU for 9 days. Both Carotid arteries were blocked. The stroke was caused by the blockage. But he came out of the stroke with no real damage. They could only operate on his left carotid, and he came through that just fine too. After he came home, we went to his regular Doctor and He underwent several test. He was in out patient rehab for a while because his left side, leg and arm were a little bit weaker then before the stroke. Now we are not getting along at all. We argue over everything. I ask him to do things and he has a come back. He does the things I ask but not before he makes me angry. It's always something wrong with what I say. I admit I am not patient. But it is so frustrating not to be able to converse with him. He never knows what I am talking about, or who I'm talking about, even if I say their name. I will go through a whole conversation while he acts like he knows what I am saying only to find out that he did not have a clue and woild only then ask me who or what I was talking about. I find myself wanting to just get out of the house away from him. We have 4 little dogs and he puts them in our front yard and forgets to let them in. We have a fenced back yard but he will not- no matter how many times I plead or beg for him to not let the dogs out front. He does not have Alzhimers, but Dementia from the strokes. He can drive anywhere, knows how to do our bills, ETC. But he does not do anything since the last stroke and surgery but watch TV, he wants to work but can't, will not do volunteer work, Cant fly anymore and can't ride his motorcycle. He is frustrated and so am I. I think I am angry because he is no longer the same person. Not his fault I know. But not mine either. If anyone has had this simular situation I would appreciate any feed back. His Children do not come to see him and are no help. My daughter lives here near us but she has MS so I don't ask her to do anything if I can help it. I have not found a support group here. But would like to go if there was something near us. Sorry this is so long but this barely touches the tip of the iceburg.

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  10. January 18, 2011 at 6:15 pm | Posted by trisha

    Gee Barb, yes, do write that book. What perserverance and spirit you have been blessed with. I am at the early stages with my loved one---still learning the shock of changes un-looked for. It looks like a scarey journey, and i already thank all of you for your candid sharing of your experiences, fears, lessons, advice. God bless all care-givers. what special people in special circumstances.

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  11. January 18, 2011 at 1:16 am | Posted by Linda

    Thank you and God bless each the wonderful caregivers that are out there daily going far above their 'call of duty' to give needed care to their loved one(s). I, too, am a caregiver to my 90 yr. old Mom. She is in stage four and can no longer remember names and dates and even the long-term memory is beginning to fade quite substantially. Her physical condition looks fair on paper, but she uses a walker and has spinal problems and intense pain from osteoporosis. She has had multiple broken bones. She is down to around 100 lbs. and eats very little. Due to her pain levels, she has been on pain killers for more than 40 yrs. She is now using a fentanyl patch, which is quite expensive & she is entering that 'donut hole' earlier each year. There are so many things I am dealing with that I would never have dreamed of before. When the Dr. looks you in the eye and says "Your mother is suffering from dementia and in her case, I believe it to be Alzheimer's Disease," you just blink and think .."Okay, what do we do next?" You don't realize all that lies before you....but you find out very soon that it's not what you thought it would be. The anger at the disease itself is what I find to be the most consuming and guilt-producing factor for me. And when I see those blank eyes staring back at me when she can't understand what I'm saying, I want to scream out at this horrible sickness and do something...just anything to rid all the sufferers of the misery it is causing them and their loved ones. I am finding that after hiring a helper, it has lifted the load somewhat. But the hrs. spent on her business and running her household, preparing her meds, taking her to Drs' appts. and things like her nails and hair.....are still mounting up. My husband is a heart patient with a pacemaker and is on oxygen, is diabetic, an amputee and has lost vision in his left eye. So I am constantly torn between my loyalty to him and to my Mom. I have a brother, who lives just 15 miles away, but he has told me he wants no part of her medical treatment or care. I am 67 and beginning to have some health issues...blood pressure, unable to sleep, stress-related muscle spasms, GERD, and most recently, migraine headaches with accompanying vision disturbances. I have visited a lot in rest homes and have never liked what I've seen. In our best local facilities, there are waiting lists...sometimes for as long as two years. Mom has home health and now we have the hired help which comes in six days a week and does light housekeeping and light meal preps and bathing, etc. I am slowly learning that what Mom says and does now is a result of the ALZ, not my dear mother. She enjoys talking about the past....we even talked about her old boyfriends recently and she divulged some things to me I had never heard before. She giggled like a teenage girl!!! Whatever it takes, I am willing to do for Mom. She gave me life and has always been there for me. But there is help outside the family which can relieve us and give us back a little of our original life. I feel my husband has probably suffered in this as much as anyone. But he is concerned about Mom, too...and is very understanding about my spending so much time there. He has even taken over the cooking and cleaning in the kitchen for the past several months....we've been married 49 yrs. God will make a way when there seems to be no way. My father was a pastor and I was raised and shown what faith can do....what we can accomplish when we trust in God, not ourselves, for strength and wisdom for each new day. Thanks for letting me vent and I pray for each of you out there....that God will bless you in a special way...lift you up to higher plain and give your generous heart the encouragement it needs to "keep holding on!" Blessings to you all! L.

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  12. December 24, 2010 at 12:40 pm | Posted by Lynn

    My Mom and I have attended alzheimer seminars and support groups for information regarding care of my Dad who is well into 90s and find that Mom is not able to apply the "yes, Dear" approach to getting into his world. I am secretly wondering if perhaps she also is beginning to withdraw into dementia herself. My husband and my sister help me, but I am concerned what to do if both become so mentally and physically needy. Is there any insurance/financial help available for this type of need?

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  13. December 14, 2010 at 5:02 am | Posted by Phyllis

    I have Dementia and take Aricept. My mother is 92 and has full on Alzheimers. My mother has been living in a Care Center that is so great that I will not mind going there if it comes to that. I have three daughters but they have children. My feeling is that it is so hard on families that care for their loved ones that it is not fair. There is help with the bills! Insurance and Medicare will help your mom and dad when they need this care. It is too much for children to give their healthy time in life to nursing their parents. I know that they want to show their love and appreciation to their loved ones but we mothers and fathers that are in our right minds don't expect children to stress their health and finances over our years of mindless life. Sorry if anyone doesn't agree but as a woman headed down this path I pray I don't put my children through what I feel many have gone through. God Bless all the care givers at home and in nursing centers.

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  14. December 10, 2010 at 2:32 pm | Posted by Eve

    My husband is 72 and has been diagnosed with mild cognitive impairment. He is ten years older than I am. AD, dementia, and depression are part of his family's history, all the way back to his great-grandfather.His doctor said that, right now, he is making memories but cannot always retrieve them at will. Most of the time he appears fine. I get frightened when, after the fact, it turns out that he has no recollection of conversations we have had. I begin to wonder if I'm imagining things!He passed all of his cognitive tests with flying colors; his CT scan shows nothing abnormal for his age.Both he and I know something is "different" with him. Of course, I want to have him stay mentally healthy for as long as possible . . . I just wonder how any of you have handled the "on again; off again" nature of early MCI.To add to my own stress, I returned to college 2 years ago to finish my B.A. degree. I hope to graduate in May, then get a M.A. in Thanatology (study of death and dying.) I volunteer one-on-one with dying patients at hospice, so I have a lot on my plate. But, my first consideration is ALWAYS my husband.

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  15. November 30, 2010 at 12:21 am | Posted by val

    Barb, I for one loved your first post! Fashion surprises had me chuckling away, and as the sole caregiver for my 90 year old mom with Altzheimer's, I need all the humour I can get.I moved in with my mom about 9 years ago, and have watched her steady deterioration all that time. At first I admit I would get annoyed with her for not acting like my mom. I now realize that was total denial on my part.Fortunately she is a very sweet and loving person, and never held my impatience against me. I've learned to be more accepting now, and that has helped me to be more patient.Sadly, she seems to have entered the next stage of this horrible disease. She cannot be left alone for any length of time or she gets agitated, frightened, and would leave the house looking for me - she has done that actually, but luckily a neighbour took her in.I have cut way back on work and social activities, but recently have hired caregivers to come in and spend the nights with her. I had to - she was waking me up every couple of hours, "just checking" and I was losing my mind with lack of sleep.This care is expensive, and I'm still on call all day every day, except the one day I still work. I had her all convinced that a long-term care facility would be good for her, to be with people her own age, make some friends, take part in activities throughout the day, etc. We visited the place together this past Sunday, and she really liked it, and seemed to be ready to move in then and there.But later that day she had a terrible anxiety attack, where she gets caught up in the past, re-living her father's death (which happened when she was still very young) and unable to turn it off. She was crying and saying "I can't take it anymore". It was heartbreaking. The only thing that breaks this cycle is to take her out somewhere for dinner or a treat of some kind.However, I realized that I can't put her into LTC. Who is going to comfort her when she feels this way? And what happens when she wakes up in the night, as she always does, and has absolutely no clue where she is? Are the staff going to actually spend time with her and calm her down, or will they just lock her in her room? I just can't do that to her.So, we're back to plan B, which is to get a caregiver in for more hours, so that I can have a semblance of my life back. It's expensive and mom's savings will be depleted in 3 years, but I feel that putting her in a place where she'll be frightened and unhappy every night just to save money is not fair to her, and I just can't do it.I must confess that the thought of being rid of her and her need for constant attention, brought a huge (if temporary) surge of relief, and I feel less trapped and more in control, since it is now my decision to keep her here with me. I feel so much more protective of her too, and more in touch with the love that I feel for her.I guess the time will come when there is no alternative but long term care, but we're not there yet. For now I'm going to try to become more accepting of the need to spend so much time with her, and to treasure even this diminished version of the mother that I love. God knows there will come a time when I will look back to now and realize that we had it good.Anyway, thanks for letting me ramble on. I wish you all the strength to carry on, and the knowledge that what you are doing is the greatest gift one person can give another.

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