Connecting with your loved one – use tools from the past!

How can I find out what hobbies and interests my loved one with Alzheimer’s had in the past, especially in his growing-up years?
Playful Caregiver

Dear Playful,
Relatives are always a great source of information though not necessarily the information anyone wants them to reveal. If you have yearbooks or picture albums they will often indicate some of their interests. Old papers will also reveal interests, resumes used to list hobbies and interests. Look at wall plaques and awards and then Google the organizations to see if they reveal any history that would indicate interest. I am assuming that the reason you want the history is to find things that make it easier and more useful to interact when visiting. It is so commendable that you are interested and it shows great compassion and concern for your loved one. If you don’t feel you are able to acquire enough information then that too can be alright. Often, people especially in the early and milder stages are very reluctant to do the things they once did quite well. It is assumed that they are fearful that they will not be able to do it well and they would just rather not do anything. However, this too passes and then they will become quite willing to try things they never would have tried, it is one of the few advantages of illness progression. In the meantime, while you are researching you do already know the things your loved one and you enjoy together and the focus should be on enjoying and together. Perhaps one of you has a favorite food or a favorite place or a favorite book or even a favorite subject that you can go over again and again. Variety may seem important to you but “the same old thing” is very comforting to them. Even the ability to complain about “the same old thing” often offers them reassurance that they “know what is going on.” I often ask people if they ever complain about their work or their families and everyone tends to smile at the question. The important part is to show how much you care, increase the hugs and touch and even if you never hugged or touched, try it, you will be amazed at how much better it makes you both feel. I hope in some way this will assist you in finding the information you need, you sound like a wonderful person to have as a “loved one.”

The awful truth…

How does Alzheimer’s eventually lead to death, especially if someone with the disease has a caregiver to feed and clean them? What happens in the body to cause death? Or is it mainly caused by complications and other factors?

Dear Unsure,
This is truly a medical question and one you should ask your physician for a medical answer. I have a Master’s Degree and truly focus on how to enjoy the time you have with a person with Alzheimer’s disease. So, I am going to give a truly “lay person” not a professional answer. It is my understanding that the ultimate cause of death is the complete shutting down of the brain that can manifest itself in many ways. I often explain the brain as the computer and if it shuts down nothing runs and thus the body dies. I attended an Alzheimer’s Association conference probably in early 2000 and one of the speakers there quoted some statistics that I feel certain have been updated by the Alzheimer’s Association which is another excellent resource to get an answer to this question. At that time they said that probably only about 6% of the people with Alzheimer’s actually went to the end stages of the disease process. Included in that statistic along with the brain shut down was another explanation that stated that one of the ways the brain shut-down was manifested was in the inability for the person to swallow. Even with a food tube they were still able to swallow saliva and that could cause aspiration which would lead to an aspiration pneumonia and death. I have also heard it stated at many meetings and in a variety of things that I have read through the years that the most common item written on the death certificate usually along with the Alzheimer’s Diagnosis is terminology that describes infection. Pneumonia would be one of those items and another would be sepsis which can be caused from something like an undiagnosed urinary tract infection or a bowel disorder. I am just passing on what would be used in a court as “hearsay” with the hope that it will help you to understand some of the more technical explanations. It at least gives you a few items to use as questions for a medical professional that can explain or even discount the information I have provided for the answer to your question. It appears that you have already heard some of the things I have mentioned as they seem to be a part of your question.

Settled in at “The Home”

What’s the best way to get my dad settled in his nursing home? I tell him he can’t come home when he asks, but he gets upset, so I’m not sure if that’s the right thing to say.
Keeping The Peace

Dear Keeping the Peace,
Your intuition is exactly right telling him he can’t come home is not the right thing to say. You don’t say whether he a dementia or not but I am assuming that he does and the answer I am giving is primarily for persons with dementia. First you want to make certain that he has some familiar things in his room that look like what he had at home. This can be done with pictures, bedspread or a favorite chair or radio – especially things he has had for a long time. When you go to visit, go prepared for a visit and start concentrating on the things you can do together and enjoy during your visit. He will pick up on your stress (though he may not be able to fulfill the role in any other way he is your dad) and concern about not being able to please him and that contributes to his concerns. Bring something he loves, a picture book, pictures of some old cars, pictures of birds, mountains, architecture, something he has been interested in during his life. Also, start with a favorite thing, coffee, candy, ice cream or if he goes out or to the shop in the nursing home say something like, “Hi, I stopped by to take you for ice cream.” If you do something together and then share your pictures and whatever else you brought to help you make conversation then you have a focused visit and you can avoid the more difficult topics. Remember to greet him with a familiar greeting such as a hug, kiss, etc. just as you always have done but maybe even step it up a little. When you are conversing try to start in the middle of the sentence and try not to ask questions. For example, in a picture book say “this looks like Jack” rather than saying,” Who is this?” This provides him with an opportunity to discuss things and be the “smart and in charge person.” If the subject gets to “home” or “going home” the best answer is to get you in agreement with him. The answer to someone, if they actually says, “I want to go home” is the truth and that truth is, “so do I.” Then the very next thing you want to do is change the subject to a different subject as quickly as you can – you may need to go for ice cream again! When you are ready to leave don’t make a fuss about having to go, in fact try to arrange for a staff person to assist you with exiting. Say warm hello’s and avoid good byes, get him engaged in something else and then leave. These are some general tips and they will take some practice but you can start having better visits and when you adjust so will he.

Activities to do with your loved one

What are some fun, safe craft projects to do with Alzheimer’s patients?
Crafty Lady in Madison

Dear Crafty,
There are many fun things to do with a person with Alzheimer’s disease.  Check in with your local Alzheimer’s Association (either from the phone book or on the computer).  They have a paper called 101 things to do with a person with Alzheimer’s disease and it has a lot of quick easy ideas.  A person with Alzheimer’s needs to feel useful and important but that doesn’t mean they can do the things they once did.  What it often does mean is that they will try things they were always insecure about doing before.  Keep in mind when they don’t know how to do something or they aren’t sure what you are asking the only safe answer is NO.  So, don’t ask if they want to just get started and invite them to join or just hand them something and then proceed.  They can do the same thing over and over without honestly getting tired of doing it though it often gets boring for the caregiver.  Another thing to keep in mind, just because they gripe and say things like, “this is the last time I am going to do this;”  as long as they are not visibly agitated they might just like to complain – most people like to complain a bit especially about work.  Discussions and reminiscing about anything is really fun but it requires a technique – instead of asking questions, start in the middle of the sentence or just share knowledge, such as “when I was a little girl we used to pick mulberries at my grandmother’s farm.”  If they are interested they will add something or tell a story, if not try something else.  Photo albums are great again instead of saying. “Who is this?”  Say, “This looks like, John.”  If they don’t know and don’t care they don’t know and don’t care, if they do and you have used the wrong name it gives them a chance to correct you and for them that is a “feel good” opportunity.  It isn’t what you do and it isn’t the finished project that is important what is important is that you are sharing good time together and enjoying relationship and interaction.  It is important if you are the primary caregiver that you find a place where they can interact with others like themselves and have “peers or friends” and equally important for you to have that time to do things you need and want to do without them.

Prevention is the best medicine

What sort of changes can I make in my diet and exercise regimen to prevent Alzheimer’s?
Acting Now

Dear Acting Now,
This is a relatively new approach to fighting Alzheimer’s, and applies to just about all disease and aging processes – not just Alzheimer’s disease. Eating healthy and exercising is becoming more and more relevant in the prevention of all disease processes. Of course we know that Alzheimer’s disease is a regressive, degenerative brain disorder – not just a “little memory problem” that can easily be reversed. However a healthful diet and regular exercise is the first step in trying to prevent or slow the progress of Alzheimer’s.

The most commonly touted diet for Alzheimer’s disease prevention is a typical Mediterranean diet – one that is high in fruits and vegetables, whole grains, healthy fats such as nuts and olive oil, and lean proteins and leaves out refined sugar and carbohydrates. I am far from being a diet, exercise or nutrition advisor, so talk to a nutritionist or your doctor for more specific answers to your dietary questions. If you’re searching on your own, the Mayo Clinic  and WebMD have some good information to get you started. As with all diet and or exercise programs, discuss major dietary and exercise changes with your doctor.

I have had the opportunity to attend the Dementia Congress for five of the last seven years, and in 2007 they presented a strong emphasis on the value of diet and exercise (this might be good resource to investigate, as the Dementia Congress has made much of their dietary information available on CD). In general, 30 minutes of exercise 3-7 times per week is recommended to help boost brainpower. There are also programs such as Maintain your Brain (by the Alzheimer’s Association), and a fair number of books published on the subject of Alzheimer’s prevention that include tips for ways to change behaviors to improve the brain’s ability to create new neural pathways.

This is clearly not my area of expertise, but it is an area of focus so many people – from scientists to laypeople – that information is readily available. I do believe that it makes everyone feel less fearful and helpless to know that we can take some preventative measures in determining our own potential health outcomes. Fortunately, there are a growing number of studies that indicate there is great potential for senior health when a person follows such regimens.

More about bathing

How do I get someone to take a shower when they are combative?
Rose L. in Madison

Dear Rose,
Bathing is a very difficult challenge, not only for the Alzheimer’s sufferer, but also for the caregiver. It is important for the caregiver to think first about the issue and put themselves in the position of the person with Alzheimer’s. That can best be done with a question: Is there anyone in your life that you would allow to give you a shower, because they think you need one? Would it be your parent, your child, your sibling, your spouse, your best friend, or your neighbor?

Think of it this way: having your clothing removed is a very personal and private act, and if another person were to remove your clothes without your consent, it would make you (or anyone) very combative. With that in mind, we need to then focus on the outcome – not necessarily the task. The outcome should be to maintain ones skin in good health by keeping it clean. One tool I have learned is that bathing can be done little by little, in a soothing, spa fashion, rather than giving a full shower. In addition, one must also take the time to create a rapport during bath time and develop trust regarding this private issue.

Start with several washcloths handy, and begin with a foot soak. You can roll up your loved one’s pant legs, sit on the floor and just let her soak her feet while you wash up to the knees. If that is going well, you can then start with a new warm cloth for the face. Next, move to the neck and remove the shirt or blouse “so it doesn’t get wet.” Remember, only do this if you are in a private place. You can then wash the arms, and after you dry them, apply either powder or lotion. This is not only soothing but helps the Alzheimer’s patient stay fresh and feel pampered. You may find that as you continue with this practice, “bath” time becomes less confrontational and more relaxing, and you can move closer to a full bath one step at a time.

If bath time has been difficult for some time, it may require a bit of conditioning for your loved one to feel safe again. Remember that he or she communicates primarily through emotions, and may not remember the events of the last bath time but will remember the feeling, whether fearful or comforting. Forcing someone into the shower, even if you feel you must because you have an unsanitary or “smelly” situation, creates negativity in relation to bath time. This makes it increasingly difficult for you in the future – she will remember the experience and fight it every time. When a peaceful bathing routine is established, you can avoid the fight or flight reaction.

How to make a difference

What is the best way to donate to Alzheimer’s research?  What organizations have the best reputation for their use of donated funds?

Making A Difference

Dear Making A Difference,
I don’t think there is a standard answer for this, because with all donations, one needs to do some personal homework that starts by answering some questions about your personal agenda.  Think about what you want to happen with the money you donate:

  • Do you want to affect only scientific research?
  • Do you want to donate to caregiver impact, research on care alternatives, or research on related disorders such as vascular dementia? 
  • Do you want to donate time as well as money?  This can help extend funds for your favorite charities.
  • Do you want your donation to be applied regionally or nationally?


With these questions answered, I would recommend going online and starting with the Alzheimer’s Association and Alzheimer’s Foundation.  Visit your local Area Agency on Aging, because some of the grants they facilitate need matching funding to provide support for an Alzheimer’s patient and caregiver, or to help with an opportunity to participate in medical or research studies.


There are many other research organizations that just look at specific aspects of Alzheimer’s disease and its many related disorders.  Get specific with your website searches; instead of “Alzheimer’s,” search for donation opportunities related to stroke and vascular organizations, Lewy Body Dementia, and others.  There are a lot of choices to research. Check with your state or local medical school, or any memory center to see what they need to enhance research programs or make them possible.  Find out what the philosophy, funding, and purpose of an organization is, and determine how it fits into your vision and where you feel you can make the most difference in accordance with your goals.  There are endless possibilities, as well as a great need for money.  Any organization that claims to do research should be able to provide you with the details on how the donated funds are used for its research.  Once you have gathered this information the best place for your funds should be apparent.

How to break the news

Dear Jo,

My father has suffered from Parkinson’s disease for the past 14 years, and the doctor recently told us he also has Alzheimer’s. The trouble is, my dad doesn’t know yet. We want to wait until after his birthday this month, so he can still enjoy his time with our family – we’re planning a big celebration! How do we break the news?
Putting It Off

Dear Putting It Off,
My suggestion would be to evaluate, of course with input from his doctor and other family members, how you should “break the news.” I find it rather curious that the doctor told you and not him directly, so there must be some reason for that – probably not just because there is an important birthday on the horizon. These are some of the questions you should ask yourself:

• Does he need to know, and why?
• Do you think he already knows he’s having some memory impairment, and his knowledge of the disease would provide a confirmation of why he is struggling with these issues?
• What will it mean to him, and what does it mean to you, that he has Alzheimer’s?
• Will this change his care, his independence, or his current living situation?
• Will this change the family dynamics, and how?
• What do you, your family, and perhaps he need to know about Alzheimer’s so you can continue to interact positively and enjoy the time you have together?

The celebration, and how he is able to tolerate a large celebration, may already answer some of these questions. It is often stated that one of the most feared diseases is Alzheimer’s, and it is my impression that you and your family believe your father will agree with this statement. However, I have worked with persons with Alzheimer’s disease for nearly 30 years, including my own mother. It is still possible to have many good times with your father, to enjoy every visit, and to appreciate the person who exists, though he will not necessarily continue to exist in the role he once had in your lives. It is important to learn to focus on his abilities rather than his disabilities – something I’m sure you and your family have some experience with – and to focus on enjoying time together rather than the loss and changes that are taking place. There are many resources available to assist you with these questions as you travel the Alzheimer’s journey with your father.

Making Life Better… Today

I love my grandfather dearly – he always took care of us when Mom and Dad had to work long hours, he served in WWII, and helped me become the person I am today. He has pretty advanced Alzheimer’s. What can I do to make his life easier and better?
Respectful Grandson

Dear Respectful Grandson
It sounds like your grandfather is a wonderful person. The reason I started working with people with Alzheimer’s disease is because of a very influential person in my own life who had the disease. My vow at the time of his death was that I would find out what he had (this was before the disease was understood and was often left undiagnosed) and I would do two things. I wanted to help the people who provided his care in the facility where he lived with a way to assist him. They were reluctant to spend time with him because they were afraid of him. In addition, I wanted to create cheerful places where patients with Alzheimer’s disease could live in comfort, and reduced the guilt family members expressed when they could no longer provide the care. Though we didn’t have an autopsy done when he died in 1972, I determined that he probably had Alzheimer’s disease or vascular dementia.

That was over 30 years ago, and we do now have excellent care available – I am sure someone is providing similar care for your dear Grandfather. What you can do is to continue to enjoy him, love him, and spend as much quality time with him as you can. Visit him as frequently as you can – the amount of time isn’t as important as the quality of the visit. Take him something such as ice cream, or maybe a yo-yo – something from your shared past that you both hold dear. Even if he can’t participate in the activity, as in the case of the yo-yo, you can and tell him how much you appreciate that he taught you how to use it and how much you always enjoyed your time together. If he is still getting around then go for a walk, enjoy his favorite things, talk to him by sharing your memories (but not asking questions). If he is no longer able to get around, it is fine – even to the last day or hour – to sit at his side, hold his hand, stroke his forehead and tell him all the wonderful things you remember and will hold dear. It is perfectly alright if both of you shed a tear, wipe the tear and laugh, hug, and enjoy these precious moments. It isn’t the current situation you should focus on, but the incredible memories and your appreciation for the past.

Questioning dementia

How can I tell if my dad just has a bad memory because of his age or if he’s got Alzheimer’s? He has been acting strangely in his 67th year, but he says he’s always had a bad memory. How severe should his forgetfulness be before I take him to the doctor?
Concerned in Central Florida

Dear Concerned,
You should take him to the doctor now and discuss just the things you have asked. Often, if there is no change and someone just has a bad memory, they probably don’t have anything wrong. However, you indicated that there is some change, as he “has been acting strangely.” The other indicator that something may be wrong is the fact that he is 67, and you are taking him to the doctor – someone who is 67 is usually capable of making those decisions and taking himself to the doctor.

It is important for all of us to have an annual physical, so going to the doctor should be a relatively ordinary event. However, many times in annual physicals, memory isn’t discussed – and is often avoided by patients, as many people fear that memory problems may turn out to be Alzheimer’s. The diagnostic process for any of the dementias, regardless of their cause, is a process of rule-out. What that means is that the doctor will rule out all other illnesses that can be causing the problems, and determine if it is mild cognitive impairment, dementia, etc. It is possible that he could have something that is easily diagnosed and treatable, and has nothing to do with Alzheimer’s.

If it is Alzheimer’s, then acting now is critical – the medications that are available help keep the person at their current level for a longer period of time. The earlier one starts on the medication, the better. It is equally important to get his financial and legal house in order as soon as possible, and it’s often a good idea to at least initiate some legal counsel prior to the doctor visit. This is important so your dad can make decisions on his own behalf and provide you with instructions for his wishes, should he no longer be able to make decisions for himself.