- With Mayo Clinic health education outreach coordinator
Angela Lunde
read biographyclose windowBiography of
Angela Lunde
Angela Lunde is a dementia education specialist in the education core of Mayo Clinic's Alzheimer's Disease Research Center at the Abigail Van Buren Alzheimer's Disease Research Clinic in Rochester, Minn.
Angela Lunde
The transfer of information about dementias, as well as understanding the need for participation in clinical trials, is an essential component of the education core.
Angela is a member of the Alzheimer's Association board of directors and co-chair of the annual Minnesota Dementia Conference. She is a member of the Dementia Behavior Assessment and Response Team (D-BART), a multidisciplinary outreach service assisting professional and family caregivers in understanding and managing difficult behaviors often present in dementia. She facilitates several support groups, including Memory Club, an early-stage education and support series, and more recently, helped to develop and now deliver Healthy Action to Benefit Independence and Thinking (HABIT), a 10-day cognitive rehab and wellness program for people with mild cognitive impairment.
Angela takes a personal interest in understanding the complex changes that take place within relationships and among families when dementia is present. She is particularly interested in providing innovative and accessible ways for people with dementia and their families to receive information and participate in valuable programs that promote well-being.
"Amid a devastating disease, there are tools, therapies, programs and ways to cope, and it is vital that families are connected to these resources," she says.
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Alzheimer's blog
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May 17, 2011
Fear drives shadowing of Alzheimer's caregivers
By Angela Lunde
I received a message the other day from a gentleman who said that in his support group the issue of "shadowing" comes up frequently. Shadowing is when the person with dementia attempts to keep his or her caregiver in their sight at all times, following them like a small child would his or her parent. Shadowing can have the Alzheimer's caregiver feeling smothered and their personal space feeling violated.
Let's first try to understand this behavior. It's imperative to understand that changing and challenging behaviors are symptoms of Alzheimer's (and related dementias). You've heard me say on previous blog posts, "Blame the disease, not the person." Also, it's critical to appreciate that most challenging behaviors have a purpose for the person with Alzheimer's — in other words, there's a message behind their behavior.
In people with Alzheimer's, I believe shadowing represents the message of uncertainty, insecurity or fear. "Where am I? What am I doing here? What am I suppose to do? Where am I supposed to go? Do I know you?" Consequently, caregivers represent a lifeline, security, a protector, and an anchor to oneself.
Like most challenging behaviors in dementia, there are no easy answers. We can't change or control the disease or the symptoms that it creates. We can, however, accommodate for the behavior. In shadowing, we accommodate by addressing the emotion behind the behavior — fear.
Fear is a constant companion of the person with dementia. Addressing fear can begin by asking yourself this question, "What can I do or say (or not say) to the person with Alzheimer's that will offer them reassurance and a sense of contentment?"
In general, people with Alzheimer's will feel content and safe if they have a predictable daily routine, are engaged in activities that are familiar and uncomplicated, are in an environment that is calm, and receive a daily dose of reassuring messages. Here are some other thoughts:
- Say reassuring words every day and often, like a mantra — "You are safe. Everything will be OK. It's good that you are here. I love you." Your words should be simply stated, short, and always the same.
- Another idea is to make an audio tape of your voice (or any reassuring familiar voice). The tape can be a collection of short and meaningful stories from the person with dementia's past.
- In similar fashion, a videotape can be created. Remember, persons with dementia forget recent events, so you can play this audio or video tape again and again if it proves to be comforting. Familiar movies or music is another option.
I once heard from a caregiver who was fed up because her husband with Alzheimer's would never give her "alone time" in the bathroom. What worked for her was an egg timer. She would set the egg timer for however long she wanted to be in the bathroom. Her husband came to realize that she would return when the timer went off. He would hold the egg timer and wait. For her — it worked!
But like all ideas in dementia caregiving — what works for one person may not work for another. And what didn't work one day may work beautifully the next.
As always, I welcome your insightful comments, experiences and stories.
"The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown." — H. P. Lovecraft
54 comments posted
May 1, 2012 2:56 p.m.
My mother was diagnosed with Alzheimers several months ago and is living with me. The worst affects so far are the fear she is living with. It is bizarre...she fears Alkaida is trying to get to her, she fears that her food doesn't go into her stomach anymore since she had a colonoscopy and that the dr performing the test did "something else" to her. I think I need a support group and will be looking for one in my area. I am compassionate and kind but yesteday I lost my patience with her. I know she can't help the things she thinks and feels but it is sometimes more than I can bare to see this disease destroy her mind and leave her last years on this earth in this state. Anyone out there have any suggestions on how to deal with her and her fears.
- Sandee
November 3, 2011 2:42 p.m.
Know what I've had it with? Doctors... agencies... people that are supposed to HELP us. HA! (bitter, much?) yes... EVEN HOSPICE VOLUNTEER!! Quit on us after she left mother alone; mother went to bathroom and fell. She ran outside to get her cell phone to call her husband to come help pick mother up, but saw the neighbor who came inside, instead. Did I hear this from the volunteer? NO! The volunteer refused to even return my phone call for 2 weeks and then quit. The agency? Refused to send me another volunteer! Then, mother has rapid onset dementia, which nuerologist decides to give antipsychotropic drug. Mother took 1/2 of 1 pill before I took her to her primary care physician as I suspected a UTI. Fired primary care physician after she refused to perform urinalysis. Ended up in ER, where doctor and nurse lamented this everyday fact. They said that they see this all the time and they're frustrated about it. Guess what? Never heard back from the neurologist and that medicine? Turned out was over $432!!! (in the trash; only 1/2 pill taken) Want to know why medicare is broken? Well, I recognized the symptoms this time for mom's UTI and her NEW primary care physician IMMEDIATELY prescribed CIPRO twice a day. The difference in just 24 hours was amazing. From hallucinations and no sleep to sound sleep and back to her ... well, can't say OLD self. But, funny thing. Antibiotics DO make her more clear for a short time. Researchers should examine this fact.
- exhausted
July 20, 2011 7:20 p.m.
My mother-in-law (who will turn 80 in Sept)has been verbally abusive to me for a couple of years now. My husband and his sisters (one single and the other has a husband who has only met mother-in-law once) kept telling me to let it roll off my back and I did. Over the July 4th weekend it was the worst it has ever been, such as bringing up a subjects that she should not be concerned with and told me in an abusive tone "I don't know as much as I think I do." My mother had been to support groups about my grandmother's alzheimer's and she said they act angrily towards outsiders that entered the family and whom they cared a lot about. My husband and I have been married 30 years. My mother-in-law and I have had a very good relationship over the years and its deteriorated to cordial greetings and no conversation, for fear she will get angry and direct it my way. My husband and his sisters all believe she may have alzheimers, but are fearful in approaching her about it. She of course will deny it. Her husband of 15 years is no help or support, because he to is in denial, or doesn't realize that's what it could be. He too has been upset at the way she talks to me anymore. My husband and one sister-in-law are supportive of my having minimal contact with her, while my other sister-in-law is angry and feels I should just let her continue to take her verbal abuse. My question is could she have alzheimers? She doesn't talk to any other family members like this just to me.
- Kathy
June 30, 2011 1:57 p.m.
My father was a country western singer by avocation. He had recorded four songs years ago. When he was dying (the last 11 days), I took a CD player and his CD of his records to the nursing home where he had been taken. The nurses played it over and over during his final times, and it helped to soothe him and comfort him. Music is a great stress reliever. Becky
- Becky
June 22, 2011 1:28 p.m.
my Husband has mild dimentia. one night he insisted he wanted to go home; i said we are home. he would not go to bed. i got him in the car and drove around the block and brought him in the house and he said now we are home.That worked for me.
- carolyn
June 19, 2011 11:28 p.m.
Oops. Already June 20th where we are located and the 65th year since I joined the U.S. Army.
- Monroe
June 19, 2011 11:18 p.m.
This site has been very helpful. I make copies to add to my Alzheimer file folder and for our daughters. My wife's condition is progressing slowly but surely. I am the oldest of five, so have a long history of care giving. She was raised as an only child, thru is dependent and easily accepts help and suggestions. What is known as "shadowing", I call "separation anxiety"; and it the term I use to explain why it is necessary I accompany her, e.g. medical appointments. This term has always been recognized and honored. I suffer greatly when I read many of your comments. We are fortunate to have our three loving daughters (and their families) close by. Today we have been married 61 years 6 months and 3 days. (Yes, 17 December 1949) Of all who have walked the face of the earth, she is the most wonderful person I have met, second to the Messiah. Each night my payers are for her and that God grant me the opportunity to always be available for her until death do us part. These prayers, for some time now, have included each of YOU, collectively. God bless
- Monroe
June 16, 2011 8:34 p.m.
My husband has had Alz. for 6 years. We have moved closer to our children so I would have help. We still have another house to sale and 4 cars. He won't let me sale any of the cars. He still drives some, but not sure how much longer. I don't know how to approach this problem.
- Carol
June 12, 2011 2:14 p.m.
Had an eye procedure and was behind in reading these posts. Read the post about shadowing today and it helped me to understand my husband's behavior. Thank you so much.
- Elise
June 5, 2011 12:53 p.m.
Is shadowing the same as when the person with the dementia begins reaching out to everyone who walks past them and tries to hold their hand?
- Patti
May 29, 2011 9:59 p.m.
Here's another question: What about the 'myth' or is it really a myht at all that an anesthetic can cause a CONSPICUOUS and very noticable accelerated onset of the Alz disease????? Any truth to that one???? THose of u new to this disease need to talk around to a variety of doctors and other Alz caregivers for theier experience with anesthetics.
- Alz
May 29, 2011 9:46 p.m.
For those of you that are new to Alz caregiving (less than 2 years of it): My advice after 7 years as a caregiver is to get over the emotional stress of the situation and concentrate on managing the disease both from a humantarian and loving family member and ALSO from an objective bussiness like managment perspective. If enough of us will take that advice then maybe some real answers will evolve to ease the burden. We have to be realistic.
- Alz
May 29, 2011 9:34 p.m.
What we need are some real facts about Alzhiemers. 1. WHAT CAUSES it??? 2. PHYSICALY what is happening to the brain?? 3. On average, how long does the Alz patient live??? 4. What are the last 6 months of their life like???? THose are only 4 that i ccan think of rite now. Quite frankly, i'm tired of hearing sob stories about alzhiemers. We need REAL facts whether pleasant or not so pleasent to hear. There is very little help for caregivers or the patient past a few magazines and maybe just 3 or 4 hours a week of home care offered by various municipal agencies. I've been taking care of an Alz patient now for seven years nearly 24-7. So i am PAST the sob stories, self pitty and even past the pitty and sorrow i have the patient i take care of. We need some REAL answers to this disease. We need exceedingly better caregiver support. THE REAL problem has nothing to do with the disease itself. INitialy the problem was my own ignorance and gross lack of available information regarding cost, nursing homes, medicare and how medicaid ACTUALY works!!!! Those of u not familiar with it need to find out out. All of the problems dealing with Social Security Admin just to ask a simple question regarding patients SS. Seven i've been a 24-7 home caregiver. 4 of those 7 years the patient is not even able to feed herself let alone walk or even or change her own diaper not talk. Anyone got 7 years beat???
- Alz
May 26, 2011 10:09 p.m.
Elly, the caregiver needs time away to live as normal a life as possible. This improves their health and relives stress. Adult Day Centers are a perfect place for this especially if they specialize in dementia and alzheimer's disease. Search for the Minnesota Adult Day Centers online and locate one in your community for you or the familiy you are speaking about.
- Jarod
May 24, 2011 2:14 p.m.
My dad and I have found that a change in my moms dailey routine sometimes helps. often when my dads had a rough day with my moms shadowing if he takes her for a ride or brings her down to my house for supper or coffee and cookies it seems to brake that line of thought and helps mom feel less alone and at the same time my dad gets a few needed minute to take a walk or just have time with his own thoughts. Often after an outing moms tired and will sit quietly and listen to music.
- Jo-An
May 24, 2011 12:03 p.m.
How timely your info on shadowing. I understand better why Mom wants Dad in her sight all the time. Dad does feel "not a minute to myself" but doesn't want to use the word "Altzimers" and simply calls it memory loss. I help as often as I can, and I pray my Dad doesn't become ill himself because I wouldn't be able to care for Mom like he does.
- Linda
May 22, 2011 12:45 p.m.
Just when you think you know everything......I didn't know what I called the behavior of a five-year old had a name. Though I've been immersed in alz. behavior for years now with my Mother and now my Dad I didn't know the term "shadowing".
- Betty
May 21, 2011 10:02 a.m.
Helen Jean and Ginny: My husband is like yours also and is 85. I find this website excellent but if you care for just a spouse site try going on www.alzheimerspouse.com. It keeps my life on an even keel.
- shirley
May 20, 2011 7:09 p.m.
Ginny, your story could have been written by me. My 81 year old husband is like yours. Maybe we could keep in touch. Take care and God bless you and all caregivers. We need all the support we can get. Helen Jean
- Helen Jean
May 20, 2011 2:34 p.m.
One way I get some time "off" is by playing music for my father. My 16 year old son put together a play list on an ipod of music my dad loves! A blessing of the disease is that each time he hears it it's the first time and brings him the same joy over and over. Also, a free and uncomplicated way to make a play list of music is by signing on to Pandora. It's a music genome service. I ask it to create a station of Bing Crosby music, for instance, and it plays endlessly music that is similar or complimentary. Do a search of Pandora and it will make sense.
- Kim
May 20, 2011 8:55 a.m.
I work in a dementia care community, and we, as caregivers, also experience shadowing. While the egg timer is a great idea, so is giving your loved one a stuffed animal or baby doll (We have 2 very life-like baby dolls). Our residents will cling to them, and once their caregiver is back from showering someone, or taking laundry to a room, their eyes light up to see them again. We keep everything consistent for them--especially their caregivers, so they grow to trust us and feel safe, comforted & loved. I loved Chuck's comments about turning "shadowing" into something beautiful! It's just like creating moments of joy....a person may not remember what you did or said, but they'll ALWAYS remember how you make them feel. Emotional memory is a beautiful thing!
- Tiffany
May 19, 2011 10:07 p.m.
My wife of almost 40yr diagonised with early onset Alz in Mar 09. She has been "shadowing" lately.. every time I turn around she is there... I don't feel my space is invaded but I feel guilty that I feel like she is "in the way" when I'm trying to get things done. I didn't realize it stemed from her fear.... but she is experiencing a lot of fear lately. I'm just thankful she now recognizes me now... for a time "I was the devil". Tough to handle. I guess it was all from fear. Thanks for the insight.
- Charles
May 19, 2011 9:59 p.m.
Nick: Tonight, my heart goes out to you, as I know it must be so very hard for all that you are doing to care for your wife. When she tells you something you know goes against what you know is true, keep your chin up, and just tell her your love her, and there is no one else but her! This whole situation must be so hard for you, and my heart is breaking, reading your words. My Mom is 85 and she often does not like me, as she still finds better qualities in her other four offspring, but I am here for her, and somedays, there does seem to be a truce. My heart tells me that you really need to look for help with all that you are dealing with. No matter what you decide, I will be keeping you in my prayers every day, with hopes that you will keep writing in! plus, how great that are you on-line, keeping in touch with all the rest of us dealing with Alzheimer's!!! Sending Much Love, colleen
- colleen
May 19, 2011 6:54 p.m.
Thank you for the article explaining the meaning behing shadowing. It will help me to be patient with my wife since I now know it stems from fear. Thanks very much. So glad to have someone out there who understands.
- Vernon
May 19, 2011 6:35 p.m.
I really enjoy reading the comments from other spouses that are caregivers. Not a easy job! My husband is in the "shadowing" stage. Had not thought of setting a timer when I go to the bathroom or leave the room for a short time. One thing I do enjoy is going being in the bathroom by myself! Doesn't happen too often, as he has to know where I am at all times. I have such a guilt feeling if I have a caregiver come into the home while I go somewhere I know he will not enjoy going. Having a family member come in to stay with him works, but cannot do that often, as I hate taking them away from their families. So sad seeing a love of 54 years slowly lose his mind. Prayer is my lifeline. Thank you for your comments.
- La Vonne
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