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  • With Mayo Clinic health education outreach coordinator

    Angela Lunde

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  • Alzheimer's blog

  • July 24, 2012

    Unmet needs and negative behaviors: Part 2

    By Angela Lunde

51 comments posted

Alzheimer's Caregiving

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Last week I attended the Alzheimer's Association International Conference in Vancouver, British Columbia, Canada. A focus of this year's conference was social, behavioral and care research in Alzheimer's. It was wonderful to see attention and emerging research in this area. It also validates our recent discussions about effective strategies in easing behavioral disturbances in people with dementia.

As highlighted in my last blog, it is important to see challenging behaviors as symptoms instead of problems. Think about this analogy: You have an infection and develop fever. The fever is a symptom of the infection. If we simply see your fever as the problem, we will only treat the fever. While this might reduce some of your discomfort for a time, the fever will eventually return and you will get worse because nothing was done for the real problem — the infection. Similarly, to better manage behavior symptoms in a person with dementia, we need to uncover and address the real source of the problem.

I am sure as a caregiver this can seem like one more role to take on — that of a detective assigned to uncover the real problem. Yet the goal here is not to add more burden or pressure to the caregivers. If caregivers can identify triggers, learn some techniques and skills, and are willing to employ them, the result will be fewer unmet needs and consequently fewer behaviors that challenge and wear down caregivers. In this regard, the quality of life for the caregiver can improve.

Just what potentially are these unmet needs, the real problems? Unmet needs generally fall into one of three broad areas:

  • Personal health
  • Physical environment
  • Social environment

In other words, behaviors can be an expression of a health need or an outcome of the interaction between the person with dementia and their physical or social environment.

Let's start with physical health. Persons with dementia are often limited in their ability to identify, understand or articulate when they are in pain, feel uncomfortable, are sad or are disorientated due to physical limitations. The following represent some common health issues that are often overlooked in people with dementia as potential problems leading to behavior symptoms:

  • Fatigue due to poor sleep
  • Presence of a medical condition such as an infection (for example, urinary tract infection)
  • Clinical depression
  • Vision loss or lack of proper eyeglasses
  • Hearing loss or lack of working hearing aid (check batteries)
  • Constipation
  • Dehydration
  • Need to urinate
  • Hunger

It is important to always consider these and other health conditions that may be contributors to the behavior symptoms. It would make sense that if a person is fatigued, hungry or in pain, and is unable to articulate or take care of the need independently, that they would express anger, agitation or even aggression.

Behavior symptoms also can be related to the physical environment. We now understand how powerful environmental factors are in triggering behavioral symptoms. Individuals with dementia experience increasing vulnerability and a lower tolerance to stress in their environments. I like to think of the environmental contributors to stress in persons with dementia in three areas: physical space, daily routine and structure, and sensory stimulation.

The good news is that we, as caregivers, can use the environment to our advantage because we can control and modify the environment. This means that we can play a significant role in reducing environment-related stress. We can often prevent problems, and therefore behaviors, by creating a supportive environment. In addition, we can sometimes manage a behavior (unmet need) by altering the environment in some way.

As we think about how someone with dementia interprets and perceives their environment, we can make some basic modifications to help that person feel less confused and more in control.

Strategies such as placing a clock and calendar in plain sight, reducing clutter, and keeping household objects and furniture in the same places will reduce confusion and maintain a feeling of control. Displaying familiar objects and photographs will offer a sense of security. Labeling spaces with signs, pictures or colored arrows will help people with dementia find their way around the house.

Ambiance, sound and light can all play a role in whether a person with dementia experiences a sense of calm or stress. Well lit spaces without confusing glares or shadows, low noise levels and generally quiet surroundings can reduce confusion and stress for a person with dementia.

Some levels of activity can be over-stimulating for person with dementia and a potential trigger for irritability. On the other hand, a person with dementia may be irritable because they are bored or lonely, and lack sensory stimulation. An environment that appropriately stimulates the senses, including sight, sound, taste and smell, offers a unique opportunity to ensure the overall well-being of the person with dementia (thus decrease behavior symptoms).

The use of aromatherapy is a growing field of complementary therapy. Essential oils used in aromatherapy have been found to be safe and have shown some positive results for promoting a sense of calm and even reducing agitation.

Music has a way of having a positive impact on people with dementia. Certain types of music calm and relieve tension and anxiety, while other types of music can be uplifting and improve mood.

People with dementia benefit from routine and consistency. Keeping regular times for activities, such as waking up, mealtimes, bathing, dressing, exercising and bedtime. can help orientate the person and offer a sense of security. Similarly, offering cues to distinguish the different times of day can be done by opening the curtains in the morning to let the light in. An evening ritual like playing meditative music or the use of aromatic oils may help to signal the end of the day.

Sometimes, we simply cannot prevent a behavior but we can accommodate it instead. For example, wandering or pacing is common in persons with dementia and can be a symptom with many causes. Caregivers can accommodate this by creating a safe physical space where the loved one can pace or wander with minimal risk.

Dementia is clearly a condition where a person's ability to maintain his or her own well-being is compromised. This results in expressions of distress. I have provided some examples of the contributing factors that can lead to distress for people with dementia.

However, I have not yet talked about one of the most powerful and immediately effective approaches to minimizing stress in persons with dementia — adapting an effective communication style (part of social environment). Stay tuned.

51 comments posted

blog index

  • February 7, 2013 1:34 p.m.

    Reading and knowing others care make a big differance.

    - mary

  • September 6, 2012 8:16 p.m.

    Thanks for this information. I have just realized that what my mom has is dementia/AD and my dad is struggling with how to deal with it and her. He is her rock, but he needs help. I will pass this valuable info to him. A lot of things make better sense to me now and I know it will help him. Thank you!

    - Kelly

  • September 5, 2012 11:49 a.m.

    This is my first time on this site and I thank everyone for their input. I am a geriatric nurse and I am a caregiver to many patient's with dementia. I work in a hospital and find it challenging at times to figure out why a patient is "acting out." Most of us are certified in our field. We provide activity during the day and usually have excellent help/support, but usually during the day only. I do have an important statement to make. We (professional caregivers and familial caregivers) have to work together. There are times when no matter what approach we take, our patient does not seem to respond in an effective, safe manner. Sometimes he/she will use aggression as a response. This being said, what I and other healthcare workers tend to rely on is family input. The family knows the patient better than we do and can help pinpoint what the issue might be or can help calm the patient down and reduce stress on the patient. It is very upsetting for the patient, family, and caregivers in healthcare settings to watch a patient unravel. We all need to work together and come up with a plan and routine for each individual patient so that the experience is not as traumatic. My passion is gerontology and it can be challenging and exhausting at times. Thanks for sharing your stories/comments!!

    - Nancy

  • August 30, 2012 1:42 p.m.

    Are you aware of any research on symptoms of Obsessive-Compulsive Disorder associated with Alzheimers or dementia?

    - Toni

  • August 14, 2012 3:34 p.m.

    to Megan: the first thing, your mom have to drink enough water, tea. All the medications must be proved for good connections. Your mom likes safety and a little bit more doing herself. But she needs help, this is not so fine for her. Because she will does all the things, but she cannot do all things. So she feels helpless and fear. All the things she can do, she does this in this moment. But not alone, you will help her, only help. So she becomes a good feeling. Also this is more information (input) for her brain, for all the brain cells. And she gets more reality in her life. So she can do more in the reality. This is the way for less paranoid delusions and dementia. I wrote a book, I work long time with human with dementia and Alzheimer disease

    - Susanngab

  • August 13, 2012 10:56 a.m.

    Thank you for your blog, We have only recently realizd tht mom has dementia with paranoid delusions. and placed her in an assisted living facility due to her vilent outbursts against my father. I was so frustrated during 3 recent hospitalizations that she was sent home with a UTI undiagnosed each time. Even though I askd for her to be tested. I had noticed a spike in her behaviors and thought she had a fever and no one believed they could be related. This is quite a journey we are on. Not one I would have chosen but I am willing to join her where she is every day.

    - Megan

  • August 11, 2012 11:24 a.m.

    to Ann Marie: the care workers haven t to change. The daily life must be in daily rules, nothing new things, nothing to change. Your father in law has to do what he can does, because a man will not be in stranger rules. So you have to fix the rules with him every day. Please find out what favorites things he will do. Let him does alone, what he can does. Perhaps nothing in the housework, like a wife. He will find anything like a man does. And than he does it in the moment, with your help. But he has to do more than you help. So he becomes more information in his brain. This are the connections for all cells in his brain. And then he becomes more output. So he becomes safety in his life. And he will be better.

    - Susanngab

  • August 10, 2012 10:09 a.m.

    Hi,This is my first time at this site.Thanks for all of your words of wisdom. I agree what helps or works for one may not help another. Or it may help one time but not the next episode. It is all worth a try. Some days or nights my father in law becomes so unruley our care workers are in tears. It does take some detective work to try to figure it out. I am so touched by the person with dementia that shared her own experience. Hang in there it is wonderful to hear first hand what you are going through so we can in turn reach out to our loved ones. Glad you have a loving spouse who can help you on your journey.

    - Ann Marie

  • August 9, 2012 11:20 a.m.

    My husband has Alzheimers, he was having mood swings, from anger to weeping, my Dr. prescribed Risperidone o.25 mg., two to three times a day, I have found this to be a great help.

    - Betty

  • August 2, 2012 10:00 p.m.

    To Angela, Thank You.!! For Teaching Us (Dave & I Yoga, The Mediterranean Diet, For Dr Sood, and the " Brain Training (have passed on to my Internal Md Dr.!. We Loved the HABIT "clinical Trial" !! Fighting for My life! Catherine.Look up "Clinical Trials" for Mayo..

    - Catherine

  • August 2, 2012 9:53 p.m.

    To Judith, YES , ....We, Complain about everything... but .. you are in the "Better World". But Thank you for your help, None- the-less. You see you are Not US. Bring your partner to a Memory Place,(pictures..."Happy Memories" A Memory Cafe, Friendships,Pictures, Loved ones "Lost" ....(Theirs, not yours. I am so sorry, but If I could.. remember I would .Angela will probably "Expel me from the blog" But I Must Speak from my Heart....While I can!! LOL Dave (My Care-Partner & spouse!!I Love You Dave... I Know you will All-ways Be There!

    - Catherine

  • August 2, 2012 7:31 p.m.

    to Laura and her sister:human with Alzheimer disease don t like to take a shower, as we do. Because they have no bodyfeeling, no reality. And so they have fear.They must do exercises to turn on the water and then they must wash their hands themselfe without help.Because they do this not like you and I. And then the face, with a wet washpad? They do this all alone, like they can do. And then the arms. They take the soap on the wet arms, with washpad? And the neck. All what the human does, you must speak, not tell him. In the remebertime, there was no shower.When the human does this alone,you can help with the shower, beginning on the feet, leg and upper. The same way with soap.So the human become the bodyfeeling back. It is input for the brain, and so a better output in the reality. I wrote a book. We must chance the social lifestyle, because we help too much. And so the other can not do their own thing,this is less input for the brain. It is different like ours and yours.

    - Susanngab

  • August 2, 2012 11:42 a.m.

    While this article contains some helpful information and I have always used behavior management techniques to deal with the care receiver, I think your article is over simplified. The person with dementia for whom I provide caregiving complains about almost everything, all day, every day. There is no way possible to set up an environment that would prevent this. And, yes, I have had him evaluated for depression. I think he expresses his frustration with the disease of dementia in the form of complaining about almost everything. I cannot put something in place to prevent that. It is his way of dealing with his new reality. What I can do is strive to not take his complaining personally and/or to try to do something about everything he complains about.

    - Judith

  • August 2, 2012 10:41 a.m.

    Angela thanks for your blog. It may not hit the bulls eye everytime, but we need it and to rall around. God bless and help All of us. JoeK

    - Joek

  • August 2, 2012 9:29 a.m.

    I believe persons with early memory loss, or Dementia,should be helped to maintain their friendships, and contacts as long as possible. I am presently distributig in our area a pamphlet to our churches, called "EKKLESIA Brochure - Aging, Dementia and the Faith Community." Written off a series by John McFadden,M. Div. Chaplin of Appleton Medical Center, Appleton Wis. His wife Susan,a retired Psychology professor @ Unniv Oshkosh, are also authors of "Aging Together:Dementia, Friendship and Flourishing Communities".(They also lso head the team for the Memory Cafe's) It gives everyone (including the person with early memory loss) the important message on the Value of Persons with memory loss, or early Dementia, We often make good volunteers in our churchand schools. I believe we should not dismiss the fact we NEED our friends, and Friendships. We need to be involved in activity. There will be 2 (we hope) Memory Cafes opening this fall in our area (Appleton Wis). The first of their kind,in our area. A place where persons with memory loss or Dementia can participate in a number of friendly social activities. A place where persons with Memory loss can share with each other...whatever they wish. Friendships....fulfill many Needs,that people without memory loss cannot understand.

    - Catherine

  • August 2, 2012 8:50 a.m.

    Laura, You are welcome, helping one another and finding ways to help our parents,grandparents,spouses, sisters, brothers and friends is a good thing, perhaps someone else will benifit from your experience with your mom.Thank you for sharing, I know the difficulty.

    - Catherine

  • August 1, 2012 5:58 p.m.

    Thanks Catherine for all the advice on my mom. She does have a shower chair and u are right she doesn't like water running over her face. So I make sure I wash her hair over a large sink with a spray nozzle. My mom is almost 94 and I can hardly get her out of her recliner. She watches her t.v likes to read the newspaper and that's about it. My mom was a hard worker all her life and has been widowed since 1986. She is still a strong willed lady,and I will keep trying to find ways to help her. Your advice is deeply appreciated.

    - Laura

  • August 1, 2012 4:43 p.m.

    Response to NICK: talk to your pastor or Faith Community Nurse, there may be someone/s in the congregation who would be able to help you out for a few hours. Good luck and God's blessings on this journey. My husband of 30 years, is 57 and this is a sad/dreary and frustrating time.

    - Sandi

  • August 1, 2012 4:05 p.m.

    I read Angel’s blog, I have experience a number of the ones she gave. To those that are looking for more detail, there are no stock answers. Each person with dementia is different and what works for one may not work for others. If you find something that works remember it, it may work over and over as they do not remember it. I found that the support group I attended was a great source for ways to handle situations. The people in the support group have all had different experiences and are willing to share. There are many good books available which can suggest things that worked for them. Thanks to MAYO and Angela for presenting the blog.

    - DEW

  • August 1, 2012 2:04 p.m.

    To Laura, and your Sister on your mother and "bathing".When I helped care for an elderly woman with AD and she needed a shower,she always "protested", but I began offering her favorite "activity" for after she would shower. She loved her hats, and trying them on, and some how I would calmly convince her "she should take a shower" and then We could try her favorite hats on,she had a whole hat rack of them !), it did hold her attention long enough to get her through a shower,(she never liked the water running over her" I think Alzheimer patients are afraid(my father was the same) so get her a "shower chair" to sit on and don't put the water directly on her head or face,have her sit on the chair with her back to the water, and put a pitcher in the bath area to rinse her hair so the water does not run "over her face", so she is not frightened by it. If she likes some favorite music, turn that on too, usually it is soothing to the patient,when they get nervous about something, (not loud, but soft & soothing, her favorite, talk about things she likes that will put her in a more "pleasant place" hopefully. When all else fails, sometimes let her "win the battle" like she did for you, when you were a little tyke, depending on how badly the shower is needed. Try not to fret, give her a hug insted of a shower sometimes:) My Prayers for you and your sister, just some things to try, I know "Loll

    - catherine

  • August 1, 2012 1:06 p.m.

    My son-in-law found this article. It's entitled "Understanding the Dementia Experience" and it's on the "alzheimercambridge.on.ca" website. Hope this is helpful to some of you.

    - Alice

  • August 1, 2012 8:29 a.m.

    My sister and I are the primary caretakers of our mom. She still lives in her own home and is still quiet feisty. I am with my mom in the daytime and my sister at night. We are having trouble getting her to bathe regularly.she still thinks she takes tub baths every nite, so she doesn't want help . She is no longer able to take tub baths because of her arthritic knees and she will be 94 soon. We offer to help her take a shower and she gets so angry. She says she will sponge off. We just don't know how to get her on our side.

    - Laura

  • July 30, 2012 10:02 p.m.

    Here in Ontario, Canada, my mom, diagnosed with Lewy Body Dementia, has been in the hospital for the last 7 weeks. She was admitted with a slow pulse but they soon found she'd also been suffering from a series of mini-strokes. Hence now she also has vascular dementia. Both dementias have made her combative and difficult. She cannot get out of bed, fights the nurses when she needs a change or a sponge bath etc., and is very abusive. She has also become hateful towards me, her only daughter. Changing the subject just doesn't work. We cannot get her placed because none of the nursing homes want such a challenging patient and so she has now become a "bed blocker", waiting for a spot in a home but stuck in the hospital indefinitely. As far as behaviour goes, the point made here that it is indicative of something the patient needs or is lacking is a moot point. My mother has to be changed and maintained and I can see no way to "meet her unmet needs" other than to touch and move her -- which she hates. I tried to convince her, to no avail, that the nurses were the "best" and that we'd lined them up specifically for their "superior abilities". Sadly, I just don't think that serious behaviours exhibited by patients like this can be solved by "understanding their unmet needs". There is no logic in these diseases.

    - jifer

  • July 30, 2012 2:58 p.m.

    TO DELORES: I READ YOUR COMMENT ON HOW U SOLVED TRASH P/U. WHEN U SAID 'SWEET HUSBAND' I FELT I HAD A FRIEND SHARING THE SAME PAIN. I HAVEN'T HAD THAT PARTICULAR PROBLEM BUT WE R WELL INTO THE DISEASE. I MISS HIM SO AND HE IS IN SUCH MENTAL PAIN BECAUSE HE KNOWS HE ISN'T THE SAME AND SOMETIMES FEELS USELESS. I HAVE LEARNED SOME THINGS ON BEHAVIOR BY READING ANGELA'S BLOG AND READING COMMENTS AND THEY R HELPFUL. BUT I HAVEN'T REALLY FELT THE CONNECTION IS THE SAME BETWEEN CHILD AND PARENT AND OTHER RELATIONS AS IT IS BETWEEN SPOUSES....ESPECIALLY IF YOU HAD AN EXTREMELY CLOSE/SHARING ACTIVE RELATIONSHIP IN MARRIAGE. MY HUSBAND LOOKS AND IS PHYSICALLY FIT AT THE AGE OF 84, I AM 69 AND WE HAVE BEEN TOGETHER FOR 42 YRS. I NOTICED CHANGES IN 2004 BUT NEVER ATTRIBUTED IT TO DEMENTIA BECAUSE HIS FAMILY IS LONG-LIVED AND NONE SUFFERED THIS. IN 2009 I REALIZED THE POSSIBILITY AND HIS DECLINE IN ABILITY EVEN IN THE LAST 6 MONTHS IS INCREASING QUICKLY. HE IS SUCH A LOVING/ROMANTIC GUY, MY HEART BREAKS FOR HIM/ME/US. SUCH A SADNESS WEIGHS ON ME....MORE THAN ANY OTHER FEELING. BOY...HAVE I GONE ON OR WHAT...THANKS...IT WAS MY 1ST COMMENT..GUESS I NEEDED IT!!

    - ANDREA

  • July 30, 2012 5:35 a.m.

    Angela, I am wondering what your thoughts are on using our Medicare benefit for Hospice. When do you think dementia patients qualify for care in the home? That would give us access to a nurse to help evaluate these worrisome behavior symptoms. I understand that Hospice goes to Nursing Homes as well and would be an extra support to patient and their family.

    - Marie

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