Dealing with Alzheimer’s

Good afternoon everyone and welcome to our chat on person-centered care for Alzheimer’s. We’re lucky to have two incredibly experienced, thoughtful experts with us today to answer your questions.

Thank you, Tory and Darby, for agreeing to join this chat.

Let’s start with a question for Tory.

My mom has Alzheimer’s and she’s very difficult to talk to. She repeats herself all the time or says things that don’t make sense. I’ve almost given up trying, but that feels like giving up hope. Is there something I could try to open up lines of communication?

Thanks for having me on today’s chat! This is a common frustration of many families and caregivers of people with AD, because verbal communication is a vital part of human interaction. We have to remember though, that as the disease progresses, cell death can spread to parts of the brain which control language and verbal skills, therefore impairing the person’s ability to communicate in the manner which they did prior to developing the disease. So now, you must find new ways to communicate with your mom. First and foremost, non-verbal communication is so important. Whether a person has dementia or not, non-verbal communication generally conveys a person’s true feelings about a matter, opinion, or situation- even if it negates the spoken words of the person. Eye contact, body language, facial expressions, behaviors, posture- all of these are really good indicators of how a person is feeling (mood), their response to a stimuli, or any physical or emotional needs a person may have. While your mom may repeat herself continually or speak in an incoherent way, I encourage you to watch her non-verbal communication- it can often speak much louder than words.

Another suggestion I have is trying to use different mediums to communicate, apart from the spoken word. Try using a dry erase board or pen and paper- often times, people with AD can still read and write long after their verbal skills diminish. We currently have a client at our center who has been gradually been losing her ability to verbally communicate- but give her a pen and paper, she responds appropriately and is able to identify her needs. Often times, I think we assume that since a person has difficulty verbally communicating, that they are also unable to still communicate through reading and writing- untrue! Also, why not try other modes- use art or music to interact with your loved ones.

Darby, here’s one for you. My mom is taking care of my dad, who has Alzheimer’s. The atmosphere in their house is very tense. She seems very critical of him and he seems very withdrawn. What can I do?

Alzheimer’s disease not only affects the person with the illness, it profoundly affects the family as well who must assume the roles once held by the person with Alzheimer’s. This can be overwhelming and as the disease progresses, is impossible to do alone. The relationship prior to the onset of the illness will also complicate the caregiver’s ability to cope.

Your father’s quality of life is being negatively affected by your mother’s behavior toward him. It is important that you try to determine why your mother is so critical of your father. Is this a long-standing pattern of relating to him or is she suffering from caregiver stress needs a break or some of both? It is very natural to feel frustrated and resentful at the time and energy spent caring for a family member with dementia as the illness robs couples of their hopes and dreams for the future. Whatever the reason, it is important to approach her in a caring and compassionate way to understand her frustration and find ways of getting her (and your father) some help. She may need some education on more helpful ways of communicating with your father. Perhaps it would be helpful to hire a companion to assist your father so your mother can get away, or find a nearby adult day center where your father could spend the day engaged in activities with other people.

We know there are a bunch of you out there. Send in your questions. We stand ready and waiting.

Here’s one that came in this morning from someone who couldn’t attend the chat:

Do you have a list of simple things to do to make life easier for my mom, who was just diagnosed with Alzheimer’s?
Carol K.

While difficult to answer this question with a simple list, a support group for persons with early stage Alzheimer’s came up with these ideas for persons newly diagnosed. Their family members created their own as well.

Top Ten Ideas for Enhancing Quality of Life by Diagnosed Individuals and Families Living with Alzheimer’s Disease and Related Dementias

Diagnosed Individuals
1. Control: Maintain as much of it for as long as possible.
2. Maintain as familiar an environment, routine and organization as possible.
3. Remain active & involved.
4. Take safety precautions.
5. Remain positive.
6. Support: Make sure you have it.
7. Accept your limitations.
8. Don’t be afraid to try something new.
9. Take care of you: physically & mentally.
10. Find avenues to modify prevailing attitudes regarding Alzheimer’s disease and advocate for public policy change.

Family Caregivers
1. Take care of you: physically & mentally.
2. Get a break from caregiving responsibilities.
3. Be prepared for emergencies.
4. Relax.
5. Maintain your relationships with others.
6. Get the emotional support that you need.
7. Get the best medical care you can find.
8. Prioritize.
9. Learn to control guilt.
10. Gain perspective or pick your battles.

Source: Morhardt, D. (2004) Top Ten Ideas for Enhancing Quality of Life by Diagnosed Individuals and Families Living with Alzheimer’s Disease and Related Dementias. Alzheimer’s Care Quarterly, 5(2), 103-107.

Two additional resources are

1) The booklet, entitled “What Happens Next? A booklet about being diagnosed with Alzheimer’s disease or a related disorder–again written by persons with a diagnosis can be downloaded here.

And I highly recommend this wonderful book,

2) Snyder, L. (2010). Living Your Best with Early-Stage Alzheimer’s. North Branch, MN: Sunrise River Press.

I know I mentioned art therapy, but there are others such as animal therapy and music therapy are mediums that can be used to engage without the spoken word.

Good question. I think Tory is going to answer that one.

I’ve had several family members with Alzheimer’s: my dad, my grandmother, two uncles. So this topic hits close to home for me.

We’ve only had a few questions so far. Please, send yours in.

Lenora — This is Tory. This can be a difficult transition for families, but there are ways to still maintain your relationship and celebrate your grandmother’s life. Frequent visits are a good way to keep connected. Another way is to design some time of photo album or poster of important things that have happened in your grandmother’s life to display in her room for staff members and other residents to learn about her and get to know about your grandmother’s life.

That’s another good question, right up Tory’s alley. She’s on it.

Alzheiemr’s Reading Room, This is a very common situation. I can’t tell you how many times I have received call from family members stating that their family member does not want to come and how can I get them there?

Tory’s got more to say on this. Hold on just a bit.

As Alzheimer’s disease progresses, people eventually lose the ability to initiate activity, often spending a lot of time in bed or in front of the television. What a lot of our families have found successful is to tell their loved one that there is a social outing and people were expecting them to join. Also, we find that if you present it as an opportunity to help others, they want to be productive. For instance, say, “So and So was expecting you to help with the life story project they were doing at the center.” This gives a person the sense of purpose.

This is a good one for Darby. She’s working on her answer.

Try to make her new home in the assisted living facility as comfortable and familiar as possible. Most facilities will allow you to bring small pieces of furniture, pictures of family, friends and personal objects that mean a lot. It is also important for the staff of the facility to get to know her. Bring photos, scrapbooks and other momentos that give the staff an understanding of your mother.

it’s so hard when someone is saying something you know is incorrect not to jump in and correct them. But with Alzheimer’s, that’s often a bad idea.

I know Tory has some thoughts about this.

Hi, Pat — Thanks for your question. I know this can be a very frustrating situation, especially if you are dealing with this
on a frequent basis. But, we have to remember, this is your loved one’s reality and we are not going to change that. So, instead of driving yourself up a wall by repeatedly insisting for instance that it is not 1950, why not just recognize that as his or her reality and be a part of it.
I’m not suggesting that you should encourage his or her disorientation, but rather, don’t fight it.

Remember-You will never win an argument with a person who has dementia.
Acknowledge your loved one’s reality and then redirect him or her to the present activity at hand. It is not necessary to repeatedly remind him or her of the correct year, but rather to the interaction, task, or activity going on at that time.

The area of the brain that stores and retrieves new
memories, called the hippocampus, is the first place affected when AD occurs. The cell death at that part of the brain makes it impossible for him or her to store new short term memories- there is a physical reason why this will not occur. It’s often times difficult to remember that there is a physical basis for these symptoms, because unlike other diseases, such as cancer or diabetes, the physical manifestations of the disease may not be as visibly apparent.

It’s so hard, seeing someone you love deteriorate and not being able to do anything to stop that from happening.

As the disease progresses, it is important to realize that while a certain activity and group worked beautifully for awhile it may need to be modified. It sounds like your mother could use a group for persons who are more at her cognitive and functional level. The facilitator of the group in the assisted living facility should be able assist you with transitioning your mom to a more comfortable activity group – perhaps one that is not so reliant on memory and focuses more on creativity.

I had that happen so often when I was taking care of my mom. She’d get angry at me when I was trying to help her. I think it was because she hated feeling dependent on me.

It’s very hard for many people to tolerate feelings of helplessness and hard for many to ask for or accept help. If we put ourselves in their shoes — how would we feel in their position — that can help, at least a bit.

Tory has some additional thoughts to share on this. Just hold on a moment or so.

Hi, Guest — I know this has to be a very difficult situation. Often times as a person becomes less aware of reality, we start to see some personality changes that may have not been consistent with how they were prior to the disease.

I don’t want you to lie to your mom, but in these situations, it is best to try and redirect the focus of the conversation to something that is mutual. So, for instance, acknowledge her concerns about her medical needs such as going to the doctor, and assure her that her concern will be addressed after our other priorities are taken care of. For instance, we’ ve had a client who was focused on going to the dentist. We acknolwedged her concern about her dental need and assured her it would be addressed when the time came, but redirected her to a task or activity to bring her back to the present.

Yes, this can be a very embarrassing situation for families, but important to make this as easy for your loved one as possible. Try going to restaurants that serve a number of finger-type foods or have your own special meals and picnics where eating with your hands is an essential part of the meal!

Hi, Lenora — Thanks for your question. We see this quite often with people who develop AD unfortunately.

This disease is marked by personality changes, which can be very difficult for families to see. When these combative outbursts occur, sometimes we find it best to decrease the stimulation around the loved one. AD patients when they become violent or combative are often overstimulated or don’t understand what’s going on around them and they are scared which causes a fear reaction.

This fear reaction can often trigger these outbursts. Often times by decreasing stimulation, giving some quiet alone time can help the person to calm down. You don’t want to engage in the violent behavior, but acknowledge that they are upset and let them cool down on their own.

Darby, here’s a question for you: I’ve heard of support groups for people with Alzheimer’s. Is this a good idea? Are they only for people in the very early stages of this illness?

Over the last 10-15 years, there are an increasing number of support groups for persons with early stage Alzheimer’s. Traditionally, these groups started to form to allow for those in the mild stage of the illness and who had insight to share how they are coping with the changes they are experiencing and to learn from each other. People often feel very empowered by and experience a sense of belonging in the group, recognizing they are not alone. They often find that they have a lot to contribute and I have seen the group spark a sense of advocacy for raising public awareness of Alzheimer’s disease and more funding for research.

Darby is going to tell us a little more about what kinds of things happen in these groups.

Some of the topics that persons discuss in these groups are their reaction to the diagnosis, their experience disclosing the illness to their families and friends, the sense of marginalization they feel from others, unfortunately in many areas of life including healthcare settings. They often feel empowered then to educate others about their experience and let others know they have much life left to live and alot to teach us.

Tory, one for you now: My mom, who has Alzheimer’s, is still cooking but I worry that she’ll do something unsafe like leaving the stove on. Should we tell her to stop cooking? Are there other alternatives?

This can be a very difficult situation. It’s just one more piece of the person’s independence that we are going to take control of and that often evokes feelings of guilt. The golden rule though is safety first. While it may only be a sliver of a chance, why take that chance. So, we have to get creative. One thing we should consider is why are is she cooking. Is she cooking simply to have food to eat? Or, is she cooking because it is a passion of hers? The answer to this question will determine what alternatives we look at.

For someone who just needs to eat, they may not shoot down the idea of meals on wheels, or a family member bringing over meals, or pre-heated meals prepared at an earlier time.

If this is a passion, there are other options. Can we find some meals or foods that do not require use of the stove or oven? Preparing fruit salad or tuna fish, recipes that can be microwaved. Look into option of possibly bringing in a home aide to help client prepare meals, so it is supervised.

There are many devices and gadgets out there to help prevent use of certain appliances and can be utilized if necessary, but if possible, it would better if you could incorporate the person with AD into the plan.

If there is one take home point from this question it is this: Safety first AND try to find other ways to encourage their independence- allow them to choose the menu, what time they would like to eat, where they eat (kitchen vs dining room.) Unfortunately, the progressive nature of this illness slowly robs the person of many of their abilities (including safety awareness, judgment, physical capacity, memory, etc) that allow for independence. So, as caregivers, we have to find ways to promote their independence and assertiveness.

Both of our experts have something to say about this. Give them a moment to put their thoughts together.

It sounds like you are asking how to help your mother make this transition while also trying to respect her remaining sense of choice and autonomy and to also avoid any sense of her feeling that you are abandoning her. This is one of the hardest areas to balance – being protective which is essentially what you need to be while also respecting your mother’s independence and participation in decision-making for as long as possible.

I would suggest that you take a look at the facilities first. You know your mom better than anyone I imagine and can probably sense which may be the most comfortable for her.

Thanks, Rose. I know how hard it is to make this transition without having your mom feel abandoned or that you, yourself, are abandoning her. This is not true! If you feel that your mom is at a point where she is able to help in this process, it would be empowering for her to verbalize what things she is looking for in a facility and what things she dislikes. If you emphasize to your mom that she is going to have more of her needs met, she may have a different perspective on it. If this is an overwhelming process, it might help to narrow it down to a couple of places for her to visit.

Darby, a question for you: I’ve heard people with Alzheimer’s respond well to music and, often, art? Do you have any advice about how I can bring these activities into my parents’ lives? Every time I suggest they go somewhere, they become resistant.

The creative arts as therapies for persons with dementia have been shown to be effective in promoting a sense of well-being, managing stress, expressing feelings and improving communication. If your parents are reluctant to leave their home, bring the music and art to them. Play music that they know and love, provide art and craft supplies for painting, making a collage, working with clay, whatever might stimulate their imagination. In some communities, you may be able to find an art or music therapist who will come to the home to assist you and help develop ideas for you based on your parent’s functional and cognitive level. Find an Art Therapy Association Chapter here.

You also may find it helpful to modify your approach and not be so direct in your suggestions. As the disease progresses, persons with Alzheimer’s disease lack the ability to initiate interaction with others or have the judgment to make decisions for themselves. You will increasingly need to make decisions for them and will need to communicate your suggestions in a way that provides less open-ended choice. For example, it is time to go now. Would you like to wear your blue dress or the red dress?

Tory, I’d like you to respond to this: I get the sense that my dad, who has Alzheimer’s, needs more contact with people. He seems awfully lonely and we, his kids, live pretty far away. Any suggestions?

Sure, Judy! It is very common for people with AD to become isolated, spending hours on end either sleeping or sitting in front of the television. As the disease progresses, people with dementia lose the ability to initiate activity, often becoming sedentary and subsequently isolated. Well, my first response, of course, would be to seek out any adult day services or senior centers in your area that would encourage your dad to be around other people.

Depending of your area of residence, this may be difficult to find if you reside in a rural area, although we are starting to see more adult day centers in connection with local hospitals. If ADS is not an option, there are some other avenues to encourage social interaction. Social service agencies often have companions” that you can hire to go and spend time with your dad- whether it is playing cards together, helping out with household chores or errands, or just sitting together.

If you feel that your dad’s loneliness is becoming a major problem, causing significant isolation and/or depression, there are residential facilities that may be helpful in promoting socialization. Depending on your dad’s level of need, these facilities can range from independent living communities, to assisted-living facilities, to long-term care skilled facilities.

We have a reader who’s asked about having an initial conversation with someone who may be developing Alzheimer’s. We’ve asked her to be a little more specific and hopefully will be able to post her question in just a minute or so.

Darby and Tory, any thoughts about how to have that first conversation with someone who’s just beginning to demonstrate some symptoms?

The initial conversation is tough, but it may be a relief to the caregiver that someone has noticed something they have been trying to manage and probably undergoing much stress. Be compassionate and understanding. Describe what you have seen and see if they have observed these changes. Offer that you are available to help in anyway you can. You may want to try to help locate knowledgeable physicians for them to begin the process of evaluating the changes.

Hi, Judy — You really need to gather information from other members of the family and people who are close to the person who you suspect may have AD. You may find that other people are noticing the same or similar behaviors that are not normally seen. Often times, it is the person themselves that will make comments some of their limitations or abnormal experiences.

Some of the symptoms you will notice that the beginning of AD: Memory loss, confusion, difficulty performing familiar tasks, or impaired judgement, and problems with language.

That’s an awfully hard but important question, Susan.

I wonder if you can think of something that might bring your father joy. Something he might enjoy — something that has brought him pleasure in the past. Something unexpected?

It is important to recognize that when someone has a dementia, they may also have an underlying depression that may be contributing to the changes in mood and negativity. I would recommend a psychiatric evaluation by a knowledgeable geriatric/neuro psychiatrist.

Tory, a question for you: I don’t live in the same city as my mom, who has Alzheimer’s. And it’s awfully hard to talk to her on the phone. Do you think I should try to Skype her, if I can arrange someone to set that up? Does that work?

Skype is a great technological tool we can use in today’s world and can be beneficial to communicating with someone with AD, if the following considerations are taken into account. 1. If the person recognizes the caller, otherwise it may be a bit confusing for the person with AD. 2. If the person with AD seems comfortable with the Skype call — perhaps focusing the call on a grandchild who tells her about something she has done at school or the daughter sharing a memory of something important from her childhood. 3. While this may seem a little staged, we have to take the responsibility for focusing on the call in ways that can be pleasureable for the person with AD and not expect him or her to do something that she can’t. 4. It can be a very positive experience for children who can tell stories to the person with AD and be rewarded with nonverbal communication like nods and smiles or even laughter… rather than the questions and comments a grandmother without AD would make.

Darby, there’s a lot of loss associated with Alzheimer’s: the loss of abilities, the loss of relationships the way they used to be, the loss of future possibilities. How do you advise people to handle that?

It is very painful to lose your loved one to Alzheimer’s disease or related dementia. There are so many losses — loss of relationship, loss of intimacy, loss of the future with this person. This is such a very important time of your life. You have an opportunity to help your parent or partner or friend retain as much dignity as possible in the face of this loss. Ultimately, the kind of comfort and care you give to them is the legacy you will leave for others. You will not be perfect at this, so remember to be kind to yourself along the way, too. Please find supportive people in your life with whom you can share this time.

Ladies, thank you very much for participating in this chat. It’s been so important.

Those of you in the audience who want to follow me on twitter can find me at @judith_graham.

Our next trip web chat will be on children with disabilities with my colleague Deborah Shelton, June 28, Tuesday, at noon central.

Have a good day everyone!