• image.alt
  • With Mayo Clinic health education outreach coordinator

    Angela Lunde

    read biography
The Mayo Clinic Diet Book, learn more

Free

E-newsletter

Subscribe to Housecall

Our weekly general interest
e-newsletter keeps you up to date on a wide variety of health topics.

Sign up now

  • Alzheimer's blog

  • July 10, 2012

    Negative behaviors may signal unmet needs: Part 1

    By Angela Lunde

55 comments posted

Alzheimer's Caregiving

Subscribe to our Alzheimer's Caregiving e-newsletter to stay up to date on Alzheimer's topics.

Sign up now

Linnie wrote recently about the meaningful life she shares with her husband even though the past nine years have included living with Alzheimer's disease. Linnie is the primary caregiver for her husband and she is fortunate to employ the help of others as well.

Although I don't know Linnie personally, I am quite sure she is a loving wife and remarkable caregiver. She wrote that she's: " ...always aiming to be loving and respectful, even in times when his behavior threatens to send me over the edge."

I think all caregivers understand what Linnie means when she mentions "his behavior." In caring for a person with dementia, the term "behaviors" is often used to imply some negative distress exhibited and observed in the person with dementia. It can include agitation, paranoia, resistance, or even yelling and hitting.

For a long time I have said to caregivers "Blame the disease, not the person." It's a way to help caregivers separate the person with Alzheimer's from some undesirable behavior, and to appreciate that the person with dementia is not intentionally acting bad or trying to upset, frustrate or annoy caregivers. I still maintain this notion, and certainly we should not blame the person for their disease. Yet, I want to be cautious that we do not simply dismiss or blame the behaviors on the dementia. To do so can have tremendous consequences on the overall well-being of the person with dementia, as well as to you, the caregiver.

It makes sense that behaviors such as agitation, yelling, hitting or uncooperativeness are part of a brain dysfunction linked to dementia, but here's what I want to make clearer — dementia itself does not create these behaviors. The environment, physical discomfort (pain for example), our approach and communication style are just a few things that can have a person with dementia behaving in a particular way.

A colleague of mine recently described dementia as a type of disability where one's experience of the world is shifting over time, and that the distress or behaviors exhibited by a person with dementia are purely an expression of need. I think most of us probably believe that much of human behavior is motivated by specific needs that have to be met. Abraham Maslow, a psychologist, talks about basic human needs — food, warmth, sleep, safety and security, as well as higher order needs such as the need for affection, belonging, love and self-esteem.

A person with dementia has both basic and higher order needs, including those for social contact, physical touch, praise, and a sense of belonging, purpose and control. Yet for people with dementia, their ability to satisfy these needs on their own diminishes over time and can go unrecognized. And as persons with dementia lose their ability to communicate their needs effectively though words and language, overt behaviors fill the void. In other words, behavior is communication.

Caregivers as well as doctors and other professionals tend to label behaviors with words such as difficult, disruptive or, worse yet, will label a person with dementia as combative, resistive or challenging. Yet behaviors are simply communication tools when language and other means of coping are no longer available. I believe one of the best things we can do for a person with dementia is to shift our way of thinking and view behaviors as neither good nor bad, but as a bold sign that there is an unmet need that requires attention.

If you accept what I am saying, then we as caregivers (family, friends) can play an enormous role in easing (and preventing) distress for the person with dementia and ultimately ourselves. Teepa Snow, an extraordinary dementia education and care specialist said recently, "If we can help care partners see the 'behaviors' as the tip of the iceberg and as something to be curious about, to investigate and to explore, rather than to judge, then we can change the entire paradigm."

As a family or professional caregiver how do you begin to investigate, explore and figure out the unmet need? Family caregivers may have an upper hand here because they understand better than anyone the personality traits, life history and personal preferences of the person with dementia. This understanding offers important clues. Yet family members can also struggle the most because this shift requires letting go of the person as they once were, altering expectations and changing well established patterns of communication.

In my next post, I am going to offer more insights as well as specific techniques and strategies for uncovering the message (unmet need) behind the behavior.

Until then, I think Linnie has some excellent advice, "While living with Alzheimer's disease is no picnic, I believe Alzheimer's disease is manageable if one can hang onto an attitude of gratitude, laughter and love."

55 comments posted

blog index

  • May 24, 2013 4:59 p.m.

    Its hard to imagine that someone could live in a residence for 57 years and at a given point during the day can't recognize anything around them to be their home. Pointing out things, showing pictures that are hanging, nothing. It can last an hour or three at times. So difficult

    - Lori

  • May 11, 2013 10:11 p.m.

    I never thought of it like that. Behaviors can signify a need unfulfilled.Its pretty simple. And when you think about it, we touch our elderly the least of any age group. They need love too! Wow.

    - Ronnie

  • April 23, 2013 9:11 a.m.

    Sometimes a dementia sufferer expresses a desire or "need" that can't be met. My mother-in-law wanted to move into a place of her own. She was dependent on others for care though. So I would tell her I was checking out places for her. And we'd talk about what we'd do when she got her place, the things she'd move there & so on. I knew it was just a pleasant fantasy. But it gave her hope and kept her from constantly lamenting the loss of her things, the loss of her independence. If your loved one is in a care facility, that may well be the best place. But if he or she talks about wanting to go home, you can express your caring by saying you'll talk to the doctor about that or it'll happen soon or delay it by saying we'll see about that when...then come up with a plausible excuse. The roof needs fixing or the air conditioning or we are interviewing people so we can hire a housekeeper or the place needs painting. Whatever! You don't deny the request, just delay it. Eventually the person will probably get used to where he or she is. Then you can focus on his or her needs or desires in that moment.

    - Diana

  • January 10, 2013 4:21 p.m.

    Hi Everyone I have Picks Disease which came on after Head Trauma some 6 years ago.Im younger than most at 54 and do my own caregiving as my Spouse,14 yrs my Junior doesnt care to read up on this Disease and its pitfalls.I do everything from paying bills to trying to make her whole family happy.Regarding Sy's remark about Sex,maybe you should give in.My wife will work 3-5 hours a day and Im lucky if we have sex twice a month which leads me to search Porn etc yet Ive been accused of having relations,far from the truth.I feel we are getting more distant everyday and to be truthful would rather live alone than look at a "sour face",I didnt ask for this yet my Neurologist was told by her that I spend alot of time on the computer,reading etc.Im educated and always searching for new treatments,not on Facebook.8 years in a Marriage for "better or worse",I dont think so....

    - KR

  • December 30, 2012 10:36 p.m.

    This is an excellent article. I have just recently moved in with my mother to care for her. Since moving in, my motto has been "tone is everything." But it's not just tone, it gesture and body language as well. So much of her daily living is out of her control and this confuses and frightens her. I'm constantly reminding myself and other family members that tone and gesture can diffuse many of the behaviors related to dimentiia. I can't imagine what it would be like to know that your mind is not up to par and also know that your loved ones are annoyed and impatient with you.

    - Cynthia

  • December 4, 2012 9:52 p.m.

    So glad I came across this article. My Mom is in an memory care facility Emeritus. And her behavior has changed. I believe it is from unmet needs. Manager says one thing but my sister and i have experience the opposite while visiting. Such as Mom loves to help so the manager said mom could fold and help set tables but we have noticed the staff will direct residents to stay out of eating area not to enter at all. thats one example. Wondering if anyone has info on residental care homes and there experience with them? Seems like there would be better care and more one on one help.

    - Cindy

  • October 22, 2012 8:09 a.m.

    to Ann, yes it is so. All human are not so good, when they think they have such diagnose. It is usually. We also are not so good,when we think our doing is not so well. So your father have to do his things in the daily life. Not like we do, because his doing is an other way. In his brain are other connections as in your brain. In his life there are other things, and so the brain cells will work, when he do his thing. The biochemicals in his brain are better working. I wrote a book Rediscovery Rediscover. I am for a long time a caregiver with special knowing.

    - Susanngab

  • October 15, 2012 8:38 p.m.

    My husband is quite far along with his undiagnosed dementia but completely denies he has a problem at all. Is this unusual? This is why he hasn't been diagnosed.

    - Ann

  • October 8, 2012 2:23 a.m.

    PS: I am so thankful, I did not say that enough, for our facilitator and all, all of you caregivers and dementia sufferers for the wonderful lessons learned and the opportunity to explore the unreal and uplifting limits of caregiving.

    - Helene

  • October 8, 2012 2:12 a.m.

    I have followed this wonderful newsletter and the posts, for close to three years. Since my dear Jean passed, this last June, actually, on June 11th, I have kept the last newsletter in my inbox, trying to find time to "check-in". Tonight, I am not "finding" time, but MAKING time, because Jean, my spouse, would be 87 today. How do you say Happy Birthday, the first time this day comes around and your loved one is... gone. I miss him today and in things little and big that take place in my bereaved life, every day. The journey with Jean was far from easy and straightforward, but I feel so, so grateful that I accompanied him to the very, very last moment: he died in my arms, safe, knowing he was loved (and had loved me to THE END). I want to share with this "anonymous" group that has been so helpful to me over the last three years, one of the most beautiful metaphors I can thing of, regarding my Jean, regarding dementia. I can take NO credit for it. My dear J. just spoke it to me, not that long ago, when I was with him at the Assisted Living residence where he had to be for the last eleven months of his "life among us". This is exactly what he said, unexpectedly: "You are my periscope". And, I, to this day (and that feeling will be with me forever), think it is the most beautiful thing he ever said to me. From deep under the massive burden of his dementia, he knew I kept him abreast of what was going on, "above".

    - Helene

  • October 2, 2012 10:43 a.m.

    I feel this is so true. My Mom is in a Memory Care facility in SC. I am not living in the area, over 700 miles away. I try to visit every 3-4 weeks, which is not enough but the best I can do right now. I do have family in the area, but so discouraged when their comments are always, "that's just part of the disease", whenever I mention changes that I see, which seem to be everytime I visit, along with Mom deteriorating very quickly physically. Yet, when I am there, she comes out of herself, is loving, communicating, very affectionate, even telling me the last time I was there,'how I always show her so much love'... Unmet needs, makes so much sense to me, if she is not receiving and her needs are not being met, she will deteriorate quickly - I feel. I am so glad to have found this sight. I am working on educating myself on this horrible disease. Would love to attend seminars and learn as much as I can. MLS

    - Margie

  • September 25, 2012 4:05 p.m.

    I'm glad to find this blog. I need to vent , but will write more later. My husband of 56 years has not been diagnosed although two of his doctors recommended it. He refuses. I believe he thinks no one notices his symptoms of dementia although all his friends and family see it.

    - Ann

  • September 21, 2012 2:21 a.m.

    to Charlotte: Progressiv in less is the resultat from less to do. So you have to do any thing you can. When you do, please speak with your voice. So you hear with your ear. It is information for the brain. When the brain becomes more information, the brain cells will be better working. You have to do this every time. The biochemicals will be more and so you change from less input and more output. The brain needs more information You have to see on the table, and say all the things. Shut your eyes and say all the things you know. Take the things in your hand and say what it is with your own words. So your brain has more information.

    - Susanngab

  • August 31, 2012 6:04 a.m.

    I have been diagnosed with Fronto Temporal Dementia about 5 years ago. I first was told I had a brain tumor in the front part of my brain at the ER when I went in for extreme headaches and high blood pressure. They did a CT Scan. I took this copy to a Neurologist and found out that it was Lesion at the base of my brain on the outsiide that holds the spinal fluid and it would never be anything. I was told. I have severe fire burning headaches and they do not understand and test out fine. I have been re tested for Fronto Temporal Demential and in two years I have hardly progressed any at all. Praise the Lord. I feel like though now my talking to others is less and going out is less. I have a great caregiver my husband. My prayers are with so many that are suffering and that do not have anyone. Friday, August 31, 2012

    - Charlotte

  • August 15, 2012 1:30 a.m.

    My Dad has may health problems/needs that my mother could not meet due to her own health issues. We finally needed t0 have him moved to an ALF because he refused in home care and my mother was exhausted and unable to continue caring for him at home. He has since been diagnosed as having dementia with alzheimer's tendencies, which has been getting worse. He has always been a very "difficult personality" but now with his dementia, hisbehaviors are now exacerbated. He feels all his difficulties are my fault and tells every caregiver not to talk to me, to only speak with his wife (my mother) who herself can be confused at times and has needed help in directing his care. He chronically complains about my mother to me calling her awful names (he was never very nice to her in the their marriage of 50 yrs). In fact, he calls everyone names, is very rude at times, and has been asked to leave by two ALF programs. I realize he most likely feels a lack of control over his life, his body and his mind. I can appreciate how awful this must be after a life of controlling everything and everyone around him. I try to redirect his conversation when it gets too insulting or apalling to a more positive avenue, but it is not often successful. I have tried being his ally and take action on his wishes, but then I am accused of "taking over". I have tried pointing out that he has hurt someones feelings by calling them names. I have tried being stern. I am lost. I need help

    - Kathy

  • July 30, 2012 9:53 p.m.

    After 8 + years of hubby having Alzheimers, I couldn't agree more.

    - Pat

  • July 24, 2012 8:12 p.m.

    After 6 years as primary caregiver for my wife, who has been diagnosed with Lewy Bodies Dementia, I read your article with great interest and can not agree more. However it takes a lot of conscious effort to keep reminding ones self and the concious part is not always present. In the heat of the moment it is not always easy to stop and think rationally and logically resulting in many mistakes. But we keep trying.

    - Siem

  • July 24, 2012 10:01 a.m.

    Angela I can appreciate what you say about “unmet needs”. I can only speak to the husband wife dyad. Most of what you write is opinion and that is okay. But I feel we need more research on this topic and this then would allow education of the health care professionals to offer appropriate information and guidance. My husband and I married 50 years now have a symbiotic relationship. For over 5 years we have been trying to meet each other’s needs. My husband does not remember where he lives, where the toilet is, how to shave, when he last ate or slept, but I do. He seeks reassurance that he has put his clothes on correctly: sometimes yes and sometimes no. While I get tired and sad, he notices. At times he makes a reasonable effort to compliment me and thank me. I know when I am upbeat; he joins in and seems less anxious. Perhaps the hypothesis should be that when the family caregiver’s needs are met, the patient’s needs are met.

    - Marie

  • July 23, 2012 8:31 a.m.

    My mother is 93 and this past spring we moved her to a "memory unit" in an Assisted Living Center. It is small and caring which we thought would be less overwhelming for her. She has her own furniture in her room. I am worried about medical decisions regarding her Dementia/Alzheimers. Right now I am trying to read everything I can so not to make incorrect decisions about medication etc but how does one know what is truly best. The comments about needs not being met and changes in behavior make sense and I can see it happening. Some of the same behavior was happening when she was staying in her own and our homes. Physically, mom is excellent. Wondering if taking her out for visits or lunch, etc is a good thing or more confusing. Dinner there isn't until after 6:00 pm - are visits in the late evening okay? She has always slept well and was starting going to bed around 9:30 or 10:00 but lately is up walking the halls waiting for a family member to come or looking for her children/grandchildren who are there somewhere sleeping. I do not know if some of this is from needs unmet; medication changes needed; or another step in her thinking. She terribly misses the kitchen chores.Thank you for the comments. We are a large family but right now are truly not working together...went through a number of years helping with physical needs of my father and now mom who is lost without him and, of course, we all have children and grandchildren and are blessed to be involved in their

    - Diane

  • July 19, 2012 8:47 a.m.

    I am not a caregiver ( I nearly wrote care "victim) It is myself I am concerned about! I am a 78 year old woman who has a good husband, 6 wonderful and caring children and 22 healthy and loving grand children. Sound greats! the problem is that they live all over this wonderful country and of course, I don"t get to see tham as much as I would like! During the last few years, I have been aware of the fact that I am not as mentally acute as I once was. I have seen a number of doctors, have taken the test about four times , have passed it sucessfully, including the count by seven backwards part. The last time I asked to

    - mary

  • July 18, 2012 11:52 p.m.

    Thank you for your blog and for the affirmation. Some thoughts: I agree that negative behavior is more often than not a manifestation of an unmet need- and think that- very frequently- that need is relief of frustration related to one loss or another. Given the magnitude of loss people with dementia suffer, it is remarkable that a happy meaningful life is possible. Over the years I have learned that the frustration I feel related to AD pales in comparison to the frustration my husband experiences(if only in the moment) at being dependent on another to "read his mind" and then meet his need- be it for feeding, toileting or sex. Though the guy I married has lost his prowess, he has not lost his "heart". I know that heart, and know that it longs to beat in a body that still works- with a brain that still works. Per my previous comment, my husband is currently at a nursing home recovering from a broken hip. While "I got" that negative behavior was the product of unmet need before the nursing home, the experience there has been illuminating. Staff there is stretched but, for liability reasons I am not permitted to help with care. Hence, he waits to have even obvious needs identified and met. The result: a remarkable increase in agitated, uncooperative behavior. The change in environment- maybe. Unmet need, yes. I am bringing him home and know that I will fail mind reading, at times, but have a leg up on managing his stress level and mine beca

    - Linnie

  • July 18, 2012 5:51 p.m.

    When I read the comments from Helene, I fear that same thing. My husband has dementia. He and I have lived in this home for 39 years, I am the caregiver now but I have my own health problems and wonder how much longer we can stay here. I too believe to a strange place will only up set him more.

    - Joyce

  • July 18, 2012 5:31 p.m.

    Thank you so much Angela for your very informative article. It is the most helpful I have read, and I'm looking forward to reading Part 2.

    - Diane

  • July 18, 2012 12:14 p.m.

    My husband is being moved to a long term care residence by his children as I have no legal mandate.I do not wish to be there the day of the transfer becuse I am against his moving to the city rather than stay in the country where he has lived for the past 50 years. Am I wrong to think that way? This will kill him

    - Hélène

  • July 18, 2012 10:05 a.m.

    My father is 94 and was placed in a nursing home in March 2012. We noticed him slowly losing his abilities but he played cards, went to dinner, lived alone, took care of the chores one week and the next he was in the hospital with dimentia, diagnosed as Alzheimers. We found a wonderful nursing home for him with a special Alzheimers area and he belong to a group called "happy feet" for the more active patients where he gets physical and mental stimulation during the day. My concern is that in the evening when family visit, he gets sad and weepy and wants to go home and go to bed. He has not been disruptive, just sad. How can the family deal with this. It appears the nursing home is doing everything I have read should be done in handling AD patients. What can the family do on their visits to help him?

    - Linda

Post a comment
Next page
  • Print

  • Share on:

  • Email

Advertisement


Text Size: smaller largerlarger