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    Angela Lunde

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  • Alzheimer's blog

  • Aug. 4, 2012

    Unmet needs and the social environment: Part 3

    By Angela Lunde

36 comments posted

Alzheimer's Caregiving

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This is the third in a series addressing unmet needs in people with dementia. As we've discussed, unmet needs, which often get expressed as negative behaviors, generally fall into one of three broad areas: personal health, physical environment and social environment. Last week we covered unmet needs related to personal health and physical environment — and now for some thoughts on unmet social needs.

I think we all recognize that dementia is associated with a great number of losses — loss of identity, independence, control, connectedness, meaning and purpose. It is the social environment, including relationships with others, that influences just how deeply these losses affect a person's quality of life. Dementia is a condition in which a person's ability to nurture their own social needs is undoubtedly compromised. Consequently, depression, paranoia, agitation, irritability or even aggression can be expressions of unfulfilled social needs.

As caregivers, family and friends, we can be mindful of the social needs for the person with dementia. In fact, we need to see ourselves as a powerful tool in this regard. We have the ability to dramatically impact well-being through the ways in which we engage, interact and communicate with the person who has dementia.

It's about providing the person with dementia with those things that we all crave and frankly need for basic human fulfillment but are often not even aware of. Here are some of those needs:

  • Meaningful activity and a sense of purpose. We all want to have something to do, to help others, to feel needed, and to "work." For a person with dementia, this means engaging in activity that reflects that individual's preferences, values and life history. This is what one reader posted recently: "My mom is living with Alzheimer's. We have found when she has a 'job' to do she is much happier than doing nothing. She goes to day care every week day where she helps in the kitchen and sets up for art projects, this is her work. As a family we create meaningful 'jobs' and accommodate the need to have purpose."
  • Sense of autonomy. This means having choice and a sense of control. Each of us needs to believe we have control over our own life and this does not change with dementia. On the surface, it may not always seem possible to offer a person with dementia complete choice and control (and in some cases we cannot especially where safety is at stake), but there many ways we can help every day. Sometimes I think of it as offering an illusion of control. For example, saying "Roger, you need to take your pills now." takes away a sense of control by telling someone what they should do. You might reframe that and say: "Roger, I know you prefer to take your pills before 8 a.m., let me get you a glass of water." Similarly think about offering choices, "Are you thinking of dinner at 5 or 6?"
  • Sense of identity. We all need to be around people who know us and know our story. People with dementia need to have their identity validated and their preferences known. They need to be seen a whole person. When you reminiscence or tell and re-tell your loved one a piece of their life story you are building identity and self-esteem.
  • Belonging and connectedness. Humans have an innate need to feel connected. We are social beings with a fundamental need to belong and be accepted. Connectedness is more than a "feel good" thing. It affects our physiology, impacting depression, stress and even our immune system.
  • Love and acceptance. Everybody needs it, everyone needs to feel it. Period.
  • To understand and be understood. We all need to feel heard and understood, yet there may be no greater place where this is challenged than in persons with Alzheimer's disease and in the relationship between the person with the disease and their family and caregivers. Effective communication will dramatically improve the quality of life for the person with dementia (and for you). Yet, knowing how to communicate with a person who has dementia is a new skill and it will take some time to master, but I can guarantee that the payoff will be substantial.

Below are some basic, yet very effective communications techniques.

  1. Set a positive mood. Your attitude and body language communicate your feelings and thoughts stronger than your words and will generate reassurance and a sense of contentment.Perhaps what is most important is to remember that when we communicate in this way, we're letting go of our own need to control a disease that we simply cannot control.
  2. Employ therapeutic reassurance (fibbing). We want to be honest with people. However, when someone has dementia it may lead to excess distress, for both them and the caregiver. Does it really matter that your loved one thinks she's employed at the day care center or that you are being blamed for losing their eyeglasses (or a myriad of other things you might get blamed for)? Don't try to correct — go with the flow. Being "right" is rarely helpful. If you want to diffuse the distress try, "Yes, I am always misplacing things. Let's look for your glasses."
  3. Recognize that being reasonable, rational and logical may just get you into trouble. When someone is acting or speaking in ways that don't make sense, we want to correct and explain. Straightforward, simple sentences without unnecessary rationale are usually the best.
  4. Listen with your ears, eyes and heart. Be patient in waiting for your loved one's reply. Try to listen for the meaning and feelings behind the words. Sometimes simply validating the emotion, "I can see that you are feeling sad, frustrated or scared," is enough. One reader explained it like this: "My Dad either escalates the behavior or calms down depending on the actions and words of the caregiver. He needs to be validated and 'heard' just like all of us. He sometimes calms when he is verbally affirmed and validated. I am learning to respect his words and actions — to listen and observe with new ears and eyes."

I hope and believe that as a culture we are beginning to see behavior as an expression of a person's needs and wishes. And when we know the person in all their uniqueness we can take the edge off of this devastating illness though our relationship with them. And that's what its' really all about — all of us in a relationship.

"Someone to tell it to is one of the fundamental needs of human beings." — Miles Franklin

36 comments posted

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  • December 17, 2012 7:48 a.m.

    to Zina: I think you can do it. But your father in law must have sign, that he is not in his home. But he is wellcome. This he have to hear often in the day. And the memory is not in change to the new things. So he have a place, he know this is his place, perhaps on the table, or tv. And when he come back. You have to do this in his home. Then you can do the change with him.

    - Susanngab

  • December 11, 2012 6:34 p.m.

    My father in law has Alzheimer's. THe question I want to know the answer to: Is it a good idea to take him out of his familiar surroundings for 5 days? He has never been to his sons home and I am concerned that it will not work. Please advise? Last year, he would not go into his 2nd home. He said the people that live there may not want me here.

    - Zina

  • October 1, 2012 6:41 p.m.

    left without a diagnosis......neurologist looks at mri films, and exclaims, you have chunks in your brain missing! the rest of the visit didn't get any better. He just hadn't seen anything like it before. maybe he wanted a spot on Mystery Diagnosis. I Needed a diagnostition, not a lacking person with his white jacket stethosccope, iffy piece of framed paper on his rather unclean wall. He didn't offer to look into it, consult with others with more information than him, all and all the worst type of doctor's to be at when you first are stumbling about trustingly asking for help. Why are they even out there at all. We have been much worse off since his well thoughtout statement months since than if I had just gone to a chiropractor for my headaches

    - eliz

  • August 30, 2012 5:19 p.m.

    to Bonnie: your mom is knowing, that you are coming and stay with her. She is feeling all time. Please stay with her all time you can do it. So she is in love and security. But she can not speak to you. When you ask her, she can not say or remember you, because in her memories she is going for time you are a little girl, or otherwise. So she don t know your name, because you are grown up. She is not in the reality. She know nothing from her body. So she can not stand, or sit down. The medications are all in her body, so it is a mix from these. The only what you can do, is staying by her and speak with her, held her hands and say, the brain is good and so body also. She has no feeling for the body. And you have to get a good therapist for training bodychematic and bodyfeeling for her. I am a caregiver and wrote a book for those problems

    - Susangab

  • August 30, 2012 8:33 a.m.

    My mother has taken a turn for the worse. Her physical health had deterioration to the point she could no longer walk or stand.Even sitting up in bed became impossible. I had to make the heart wrenching decision that I could not do it anymore. The doctor was tapped out with the medications. Mom is in Hospice House now. This journey of caring for my mother has been a massive bundle of guilt. The guilt I have experienced is unfounded and unrealistic but knowing this does not eliminate it.I try to remind myself that had I not stepped in, Mom would not have survived these past few years on her own. The rest of the world may not appreciate this and perhaps that is the source of my guilt. As Mom lay in the hospice bed sleeping, unable to open her eyes or speak I feel that she no longer needs me. She is already gone. Seeing her like this is heart crushing. I don't want to go back. She doesn't know that I am there.My visits are more damaging than helpful. The guilt never ends. Being human certain comes with its downfalls and guilt is one of them. I asked Mom a few days ago "Do you know who I am? What's my name?" Her last word to me was, "Pollyanna".

    - Bonnie

  • August 27, 2012 6:22 p.m.

    to Luz: Your mother cannot go to the special room, because she needs help. In the first time she is changing, she must have a nurse, who goes with her and stay with her any times.And in the next time not so long the same.So she will be stay there in the special room. I am caregiver for eighteen years and write a book.

    - Susangab

  • August 22, 2012 9:36 p.m.

    How important is the environment to a person with Alzheimer's , my mother has been in a nursing home for 4 years and they want to move her to a different room. I heard that it could be detrimental to her condition. Is this true?

    - Luz

  • August 20, 2012 1:24 p.m.

    to Elise: All elder person want to go to the childhood home, because they remember this time, with correctly memories. It is the longtime remember, memories. So they lost the daily time. The person has to go in the daily life. So he must do anything, he can do. In the evening, all things are done, he can remember for his parents. So he has one time for to do anything in his daily life and the other time only for remember time, memories and speaking with his parents. In the evening: the last words are: I am in my bed and I sleep very well. This is the way for cutting the daily life and the memory.

    - susanngab

  • August 20, 2012 1:01 p.m.

    to Ali: the person with Alzheimer disease can not go to a day care without in the first time with the caregiver or son. The person must have security in his life. He gets fear in his life, if all the daily rules are not the same. And he becomes more illness and problems. When the person know the day care, he can goes without your help. I am a caregiver for eighteen years.

    - Susangab

  • August 19, 2012 3:07 p.m.

    Question, How do you get a person with alheizmer to agree to go to a day care or any place with out the caregiver? Not even out with his son?

    - Ali

  • August 19, 2012 10:57 a.m.

    I am a retired nurse and can do most of my mother's care, but I feel depressed and she gets upset if I am not full of life and happiness. She gets mad if I don't answer all her questions immediately. She has started going to a 5 hour day care twice a week, and it may be helping with her mood. But her health issues limit her activity. The Alzheimers is getting worse, and she often doesn't know where she is or who is here. She thinks there are other people in the house, and is getting days and nights reversed. She was upset about being so mixed up and I said I don't blame her. It seems to help when I validate what she just said. If she says something mean, I just say OK and leave the room for a while. She's better when I come back. I don't question her or argue. It's much better that way.

    - Pam

  • August 13, 2012 11:39 a.m.

    Excellent article. The comments, insights and solutions are very helpful. Alzheimer's/dementia is a difficult journey for patients and families.

    - Rosemary

  • August 13, 2012 10:20 a.m.

    i can fib about little things but how do you lie if you spouse wants to speak to his parents who have been dead for for 40 years? if i lie he will try to go home to his childhood home. if i tell him he still is is still working in the theatre, he will try to get to the heart of broadway. there are no good answers.

    - Elise

  • August 11, 2012 6:33 p.m.

    My husband has FTD and just a few months ago I found a local day care that is not specific to dementia but is there for those who need it. It's run by a local church and provides the socialization he needs. It's not too expensive 8.25/hour and no minimum time. My advice is keep looking and ask someone to help you do the research, that's how I found it, my sister did the research. I would love to join a support group but the only one in the area is once a month in the evening and that doesn't help.

    - Kathy

  • August 11, 2012 3:42 p.m.

    Thanks, Anglela. I am guilty of dropping the ball on socialization for my husband; he has a non-specified dementia. A local all-day care program costs $115@day, minimum 2 days a week which we can't afford. I'm going to investigate grants that are available. We are 71 and 74 and are both in good physical health although I had a bout with breast cancer last year (free and clear so far). He does do "jobs" - emptying the dishwasher, shucking corn, taking out trash, etc. He grocery shops with me occasionally but he spends most of his time watching TV. He used to be a great walker but now doesn't leave the house without me. His hearing isn't good, he's not very social, and he seems to be in denial about his dementia. On the whole we're doing quite well. I don't need any paid help yet and my daughter is moving back to this area to be of help, thank God. I have 2 women friends in the same boat so we support one another, and I belong to several support groups. Even though this is my first posting, I'm going to give some advice. JOIN A SUPPORT GROUP if they are available to you! They have saved my sanity!! Bless you all.

    - MaryJ

  • August 11, 2012 11:55 a.m.

    How do you convience your spouse that has moderate alheimzer to go to support groups or other organizations that will give her outside communitation as well as a resipe for me? Every friend she had she now will not try to communicate with them or admit to them she has memory problems. She insist that she is not interested in talking or doing activities with anyone but me. She does nto want me to go anywhere with out her or leave her alone for just a few hours. If I do, when I get back she is so angry; that I stayed away so long. She can still do some for herself and even wants to drive.

    - Joe

  • August 11, 2012 7:06 a.m.

    Robert is 'right on' when he notes that national organizations are dropping the ball. Long Island, NY, has a population of 3.5 million, but my wife and I must make a 65 mile round trip (nearly one hour each way due to LI traffic) to attend the one and only weekly support group provided on Long Island that is solely for spouse caregivers and the one and only support group for those in early to moderate stage AD. Both groups are at the Long Island Alzheimer's Foundation site because the the much larger Alzheimer's Association provides NO weekly support groups for spouse caregivers, and NONE for those with early to moderate stage AD, anywhere on Long Island. The Alz. Assn. also provides NO day care programs, so starting this past week I am now also making that 65 mile round trip 2 more times a week so my wife can be in a good 4 hour day care program to give her the socialization she needs, along with a mix of entertaining and mentally challenging activities, while providing me respite. Given the concentrated population here on Long Island, there should be many more programs provided by national organizations.

    - Allan

  • August 10, 2012 7:47 p.m.

    My husband & I just celebrated our 50th wedding anniversary. Our children (& a very sneaky friend) arranged a reception after we renewed our Vows during Mass. My husband tried so very hard to concentrate on the words people were saying to him & respond correctly & it took such a toll on him, we had to leave after about an hour & a half. I watched him deteriorate by the minute & took him home. It took him a solid week to physically/emotionally recover. I honestly thought for a couple days he wouldn't recover. He was diagnosed over 10 years ago & is also diabetic. I have found that promising him a "treat"(sugar free of course) will get him to the bathroom or up to walk around w/o an argument!! Thank you for all your feedback. It has been most helpful over the years!!

    - BARBARA

  • August 10, 2012 3:49 p.m.

    Angela, thanks ,this a great article. Keep it up...

    - JOEK

  • August 10, 2012 9:30 a.m.

    I love reading these articles ! Even when we don't have issues they can help us to understand others and pay more attention to how we can help our love ones or spouses ! Thank you

    - Vickie

  • August 10, 2012 7:06 a.m.

    This is so very true. They need jobs just like when they were at a higher functioning levels. This was the most frustrating part of where my mom was at her assisted living facility. Instead of let the residents help bake cookies she would bake them then hand them out. My mom would always love to break away from her assisted living and go to bible study at her church or out to lunch with her girl friends from high school.

    - Kathy

  • August 10, 2012 6:04 a.m.

    We must set some goals and boundaries. And still adjust to dementia which changes daily. I'm a caregiver, 24 hours, not a nurse or therapist who has a life after 8 hours of duty. Being embedded with dementia is different. I would not take the blame, as suggested in the article, on misplacing glasses. The next sentence, let's look for them, is a good way to respond, not only to get the job done, but to keep your own psyche from becoming just a mirror for dementia. Can anyone brainstorm an alternative to taking the husband out for hours of driving just because that's what he wants? Is there no limit to going with the flow? On nutritious food, I do have a suggestion. My husband is a diabetic and also must take coumadin (anti-clotting medicine) which means that green vegetables and salads are at a minimum. He gets carefully monitored sugar free treats of hard candy, pudding or ice cream if he has eaten some nutritious food. He still understands that and eating is not a grim experience.

    - Ella

  • August 9, 2012 8:56 p.m.

    I like the image of the "reasoning button being broken" - but how can I get it across to my husband who is insulin dependent b esides having dementia that e.g. having ice cream on top of a full meal is not a good idea or that he needs vegetables instead of bread... And in re to meeting his social needs... he does not want to do anything, no TV, puzzle, activity... just wants for me to drive him around in the car - I spent $ 250 on gas last month. Besides being expensive - it's physically and mentally exhausting. Any idea is welcome.

    - Dietgard

  • August 9, 2012 8:51 p.m.

    My husband has moderate dementia. I can relate to the reasoning button being broken and I can relate to trying to explain something only to be asked the same question a few minutes later. This journey started a few years ago and we're both in our middle 60's. I know he can't help what he does, but I have to stop myself sometimes from losing patience. The article above has given me some good ideas on how to cope. Thanks for that, Angela. Just signed up to get these articles. My husband was treated at the Mayo in 1984 for an AVM on the lining of his brain in the left temporal lobe. The current situation, IMO, may be as a result of his AVM and the correction preformed at the Mayo. His brain is wearing out.

    - Robin

  • August 9, 2012 8:26 p.m.

    Good advice I had to learn the hard way. I would quibble a bit about giving choices (autonomy) because I discovered that my husband became unable to make choices. It is too taxing. Now I tell him what he's eating or when we must change him or what's on TV. I don't have to insist if he shows distress with my choice. At that point I can offer an alternative (if possible). It's one thing at a time rather than two things in the same sentence. Making choices about the future is next to impossible.I've also found that sometimes he says no when he can't make up his mind. No is an easy word for people with dementia and is not necessarily what they really would like but is an escape from complexity.

    - Ella

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