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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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April 12, 2010

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

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Thoughts and stories from others
  1. March 5, 2013 at 4:18 pm | Posted by Julie

    I am currently living with and caring for my 95 year old grandmother who is legally blind (one eye no vision, the other has central vision), hard of hearing (possibly just a cleaning issue), gait of a toddler, has ileitis/Chron's Disease, otherwise healthy, no medications. My mom, her daughter, was murdered. To say I am stressed is an understatement. My grandmother has developed some dementia and I am in denial that she is not how she always has been. She becomes agitated, confused, accusatory, repetitive, obsessive-compulsive. It is not regular but often is worse before bed. I often get frustrated and resentful and cry. I like the concept of the Adult Day Care if you have any information on the process, places nearby and if covered by either BlueCross of Massachusetts and/or Medicaid/Medicare programs. I work 10 hours weekly and in order to increase that and work a normal fulltime job, I would need an exceptional Adult Day Care for her. She used to go to Bingo but after a surgery which removed 2 feet of her intestine relative to the Chrons she never returned. Any advice you can give me is most helpful. Thank you.

    Reply

  2. January 1, 2012 at 11:18 pm | Posted by Donna

    How do I help help my partner who is a care giver?

    Reply

    • January 3, 2012 at 10:05 am | Posted by Cat Koehler

      I wish there was an easy answer, Donna. The most simple piece of advice I can give you is to be patient, flexible, and loving. Find ways to pamper your partner - they need surely need it. If you can, find time to help with the caregiving any way you can. Your help is a great way to show your support (and spend time with the one you love). Does anyone else have advice for Donna? Cat Koehler Home Instead Senior Care

      Reply

  3. January 1, 2012 at 11:16 pm | Posted by Donna

    It's hard and you need to vent .... Frustration is a part of life with a loved one with dementia ... Being a caregiver is very hard .... Being a loved one of the care giver is hard.... Believe in yourself .... Know you are doing everything you can ... I believe ... Being outside looking in you can see how much love you are giving... I just need to know how to help the care giver ...

    Reply

  4. July 14, 2011 at 2:18 am | Posted by Caren Hamilton

    The Caregiver Stress Meter ranked me as "High." It is really nice to be validated, because most people instead like to tell me how blessed I am to still have my mom and how cute she is and what an amazing daughter I am. All true, but I would so love there to be a website where we could just anonymously rant and rave as needed, and where the facilitator would simply reply, "Man, you've got it rough. Please hang in there." No advice, no nice platitudes, just a venue to air our grievances or tell our sickly funny stories about our demented loved ones. That would sure help me get up in the morning and put on a my (very fake) happy, calm demeanor and face the challenge of being an only (adopted) child taking care of my 90-year-old mom and two college age kids and two teenage kids and husband and two 90-pound dogs every stinkin' day! Thanks, it feels so good to just vent sometimes. God Bless You All -- you are truly doing the Lord's work on Earth, even if it is sometimes just plain hard and humbling.

    Reply

    • May 28, 2012 at 2:13 pm | Posted by Pat Simpson

      Dear Caren, I understand completely how you feel. I also am so sick and tired of people telling me how blessed I am to have my mom living with me. I have to take her blood pressure and put eye drops in her eyes for glocoma everyday. I know that I have been blessed but after her living with us for 18 years and now she is 98 with health problems and dementia. I am tired of being a caregiver for her and my husband who has alzheimer's. I had him in adult day care three days a week but he became difficult to take care of there so now he is at home. He has type 2 diabetes also which means that I have to give him insulin shots 4 times a day. They both are mellow most of the time but sometime they each get stubborn, then things get really rough. I do their pill boxes, their finances, all of the shopping, and I could go on and on and on. My big fear is what am I going to do when they can't get themselves to the bathroom or take a show by themselves. I don't know how I will be able to handle feeding either of them when that time comes. I know that the Lord will not put more on my plate than I can handle but it certainly be wonderful to have a plate less full.

      Reply

  5. July 11, 2011 at 2:40 pm | Posted by Shirley

    Almost all these posts eventually refer to a care facility say 'I love my Mom and I couldn't do that to her.' Seriously, you can be her caregiver, her financial comptroller, her IRS preparer, her medical consultant, her grocery shopper and nutritionist, her clothes shopper and laundrier. But, you cannot do an adequate job of being her entire social life. Conversations and social activity are the best prevention for memory loss, loneliness, and interest in life. You will continue to offer her activities that she is familiar with. While that is comforting to her, I'm sure - it is not a good brain exercise that helps her stimulate new brain signals. Research shows that it is NEW actitivies and brain stimula that retain or regain better memory and cognitive reasoning. In the past, we heard that crossword puzzles, etc. were great for this, but that is not true. If you continually do crossword puzzles, that becomes a repetitive activity and your brainn is not learning new things and stimulating brain cells. Rest assured, there is absolutely NO substitute for a loving caregiver and no one can help guide her through important financial and medical decisions and financial chores better than you. But, she needs social activity that you cannot provide. And, if she were making these lifestyle decisions when she was younger and able to make them with her real goals in mind, most likely, she would decide to make decisions that assured her you would be continuing your own life and your own interests in your life, career, hobbies, etc. The last thing she needs is you to lose these things, to become depressed, to have a stressful marriage, to let your own friends and kids drift away. Many care facilities provide great physical and social activities and transportation. My sister and I struggled with this decision. We planted enough seeds that eventually Mom got the idea that she was overwelmed with 'independent' living. We think she may have gotten a scare or a series of scares that concerned her. The first few months at the new place were tough - she couldn't find her way around and got her area code and room number mixed up. But soon she got used to her new place and went to 3-5 physical classes a week. Her balance is better than it has been for 3 years. She is no longer withdrawn and is making friends. She is now closer to me so I can monitor her activities and help with doctor appts., etc. I still get frustrated and impatient and am overwhelmed at times. Its amazing how much help she needs now. But, SHE is improving weekly. Though she needs help and probably needed alot of help that we didn't provide just because she was doing without or toughing it out and we weren't aware of it. It is iimperative to join her Doctor's appts. Friends and hired help cannot have the same vested interest as a loved one. Most of all, it is important to make these changes while she is still competent to do so. As she ages and declines it will be so much easier for her if she does so in a familiar environment with an assortment of friends. My husband, too, is very helpful and understanding. It would be a shame if he got so fed up with a home that was no longer HIS 'home' that it resulted in a divorce or so much frustration with her needs and my needs that he resented it when she really does need to move in for closer help. Some independent living places provide an extra bedroom that if additional help is needed to comfort or care for her hourly needs, it is cheaper and more desireable than /assisted living. I am new to this (just 4 months) so have much more to learn about possible Medicare/Long Term Disability assistance. One thing is clear - we should have done this sooner so she could have adapted easier.

    Reply

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