Dementia Caregivers Conference Q&A

Questions submitted via Eventbrite:

Q. What do you feel are our communities strongest resources for those living with dementia? Where do you feel there is improvement needed?

A. We have several city, state or county-funded resources. Central MN Dementia Community Action Network (DCAN) offers dementia care at our Dementia Resource Center Clinic located in St. Cloud. Our community also has CentraCare St. Cloud Hospital-which provides services. I would like to see more resources available at individual medical clinics of all types, especially primary care offices.

Q. How much does experienced trauma contribute to dementia?

A. We have seen several clients at the Dementia Resource Center Clinic with dementia symptoms who have suffered many personally traumatic events in their lifetime. However, this may be more of an association than a cause. Recent articles on trauma indicate a lifelong impact among victims despite many years having passed since the incident. This indicates that when personal trauma effects persist, quality counseling is in order. We consider this a major risk factor for dementia, but we’ve also seen many people who have suffered very little effect from trauma.

Q. Tips for a family conference when early signs of dementia begin to show?

A. I suggest one family person take charge of getting the whole group of family members together at a comfortable relaxed setting that is the most convenient time and location for the majority. Our DRCC staff is able to lead these conversations in the professional setting of our office, however, a skilled family member with leadership experience might be able to get the conversation started. I wouldn’t plan for a single meeting to solve all the problems that the family is facing but rather plan on scheduling several meetings with someone taking notes and perhaps even calling or messaging family members with basic minutes after each meeting to keep everyone on the same page. There are other professional counselors who could mediate this type of meeting also.

Q: What is the status of medication to slow the progression of the disease?

A. Medication has not been very successful and in fact, none of the currently available medications for dementia are approved with an official indication for slowing the progression of the disease despite the fact that many clinicians offered this as an explanation for use of meds. I’m sure there are cases where this type of medication appears to have helped someone with dementia, however, people with dementia often fluctuate in their symptoms, and it may just be a lucky combination of events that would make use of medication seem the likely cause of someone’s temporary mild improvement. We believe prevention and symptom reduction strategy like we do at the DRCC and similar clinics around the country currently offers a much better opportunity for slowing progression or even reversing some symptoms of the disease.

Q. What are some guidelines as to when a person with dementia needs more care than a caregiver can provide?

This is always a very difficult decision, and I recommend other family members besides the immediate caregiver be involved in the decision and perhaps invite the input of the patient’s clinician, social worker, or therapists, especially occupational therapists, to help make this decision. Caregivers in our experience quite often don’t recognize how difficult their caregiving is for them and how it adversely affects their health, and that’s why I recommend family and other professional input on the decision.

Q: How does one safeguard financial savings when faced with putting a loved one into a LTC facility?

I definitely recommend professional input from your financial advisor, accountant, or skilled family member or close friend to help you with this type of planning. But, remember it’s best to be prepared long before the need arises – sometimes suddenly. This type of planning would be difficult for a caregiver deeply involved with the high level of personal care for their loved one to always make good decisions under these circumstances.

Q: How does one support a person with dementia who becomes hospitalized? Why don’t the patient’s wishes before hospitalization in the form of prolongation of life count even when in writing and addressed in physician’s notes prior? 

A. It can be quite difficult for a spouse or other close family caregiver to be assertive enough with hospital staff to make sure their loved ones’ wishes are adhered to especially with the current COVID-related understaffing issues hospitals are dealing with. It would be best to have a medical power of attorney document or similar previously prepared document with the patient’s input guiding the course of treatments that the patient would want. You can always ask to talk to the nursing supervisor or a hospital chaplain to help you in situations like these.

Q. I’m 82 years old and have accepted the fact that I have dementia. How can I best accept in my own mind that, in spite of all the pills and therapies I may undergo, there is no cure or going back and that I will just keep getting worse and worse and eventually may die from this in a vegetative state?  

No one should give you false hope in this matter, however, I believe that there is a lot you can do to improve your health with proper guidance and education and with the cooperation of your closest caregivers. Our Dementia Resource Center Clinic evaluations cover the many lifestyle changes and tests that can be done looking for problems that might also be correctable to make symptoms less and life more enjoyable both for yourself and your caregivers. We will look at medications that many people take even into their 80s that may contribute to their dementia symptoms. Sometimes we find medical problems like low thyroid, which can have symptoms much like dementia. Depression can also look like dementia and it’s treatable in most cases.

Q. Any special instructions, tips, or advice for getting through the holidays with all the unfamiliar/ out of the routine places and gatherings leading to fatigue and confusion? 

Q. Family members and caregivers should take it upon themselves to ensure that their loved one with dementia symptoms remains socially active, but in a quiet controlled environment with less confusion, noise, and distractions. This can be accommodated by taking your loved one into a side room and bringing family in one or two at a time for visiting. Background noise or loud music does not help. Simple directions given to family for communicating best with their loved one living with dementia include getting down to their level, smiling, looking into their eyes, speaking with a soft voice and taking it slow. It is best not to ask questions they might have difficulty answering – put more open-ended general questions like, “don’t you just love it when it snows?” Or “Grandma, you always wear the brightest colored sweaters, did you make this.” Family gatherings would be an ideal time to review family photo albums with loved ones helping the person living with dementia recall the events pictured.

Q. How to tell those you care about (and they care about you but do not understand) that you are just unable to attend all the different gatherings?

Q. If you say something like, “Carol darling I love to come and visit with you today but honestly I just get too tired for long visits. How about you come over to my house next week and we’ll talk over coffee and cookies”. If you tell your loved one how difficult it is for you and why it’s difficult, most family members will eventually understand if you explicitly tell them your wishes.

Q. Is there any compelling scientific research on humans showing a benefit of MCT oil or a ketogenic diet in improving cognition in people with Alzheimer’s disease?

Yes, there is, but this may not be appropriate for all people with certain medical conditions. A very low carb diet, time restricted eating and the use of MCT powder or coconut oil can create a certain level of ketosis. The ketones in your blood that this produces are very easily and efficiently utilized by your brain for energy even more so then glucose (sugar). Ketogenic or ketone-inducing, low carbohydrate diets have been used with some success in many neurologic conditions including seizure disorder, ADHD, Parkinsonism and others.

Q. What is the effectiveness of Aricept? When isn’t in a patient’s best interest?

A. While Aricept, (donepezil) is approved for use in most stages of Alzheimer’s type dementia, most of our clients at the DRCC have not found it to be useful. Some clinicians use it to “slow the progress” of dementia, but this is not one of the approved uses and we have not found it to be useful for this purpose either. If it hasn’t been effective in the first few months or so and especially if the patient is on many different prescribed drugs, then it may be best not to continue with it. However, caregivers need to be especially careful to never stop this drug suddenly without a quite prolonged, gradual withdrawal generally under a clinician’s supervision.

Q. My long-term significant other with Alzheimer’s just turned 64. He is so aware of the incredible daily battle to remember as the short term is gone. He often talks about ending his life, we don’t live in a state that supports that. I try to change the subject. Should I just give him a hug? Please advise.

Q. So sorry to hear this. This must be very difficult for you, especially if this is uncharacteristic behavior in your partner. I believe this calls for professional help, starting with his clinician and then maybe a qualified counselor to help both of you through this. By all means, still offer lots of hugs while trying to redirect your conversation unless you think talking about it with your loved one might help. Support groups can also be very helpful as many other couples have had similar experiences that, when shared, can become much more tolerable. We offer caregiver support groups through our Dementia Resouces Center Clinic. Visit https://dcan-mn.org/upcoming-events/ to learn more. 

Q. What types of resources are available for caregivers of someone with dementia who is needing affordable in-home respite care, but does not qualify for Medical Assistance or waiver programs? 

A. You might consider working with your preferred faith group if you participate, as most churches or similar offer home visits or respite hours for caregivers. Also, you might call your county social services office and ask them if they have any resources available that you could afford. Also, you might call Whitney Senior Center and ask to talk to the Senior Linkage person who works there and who might have some resources for you to try.

Q. How to keep them entertained at home?

This depends on the level of care required daily and also depends on their previous interests, hobbies, and favorite activities. If they still have an interest in their hobbies, sports or other activities you might want to concentrate on those types of related activities. Although they may not be able to play sports they might like to read magazines about sports with you or watch sports on TV. If they played music they might enjoy any type of music, either creating the music or listening. Most friends would enjoy a visit with your loved one if you just call them and ask them to come over and play cards most people would be glad to respond if you just call them. Anything creative like artwork, adult coloring books, constructing things like models, or just listening to music and singing along might be enjoyable. For those physically able, we have found that many couples enjoy easy dancing to their favorite music at about two or three in the afternoon and this is very good for your loved one’s brain health.

Q. How can I keep from losing my temper with my significant other when behaviors are very repetitive?   

A. The repetitiveness may be a manifestation of boredom, fear, or other negative feelings that they may have at the moment. Try diverting their attention to something that they would normally enjoy or like to hear – like singing, music, or looking through photo albums. Once you find a favorite diversion (or several) any of them might also be likely to work to diminish repetitiveness again next time. 

Q. What are the greatest needs of caregivers that are not currently being addressed by organizations like DCAN? What are ways that DCAN (and other organizations) can best meet these needs? 

A. We at DCAN and our Dementia Resource Center Clinic strategize about these needs quite often and discuss various options during our planning and budgeting meetings. Right now, we are in the process of initiating a dementia-informed counseling program for clients and caregivers to help us solve a need that we discovered several months into our clinical experience at the DRCC. We also need to advocate for federal and private insurances to cover the services that patients and caregivers need, so that there won’t be financial hardship added to the family’s burden. 

Q. Does being sedated increase the odds of dementia?

A. Not just a single time but several anesthesias especially occurring in a frail individual with several other medical issues, could create a delirium state which acutely can look like dementia symptom-wise, but usually resolves within a day or two at the most. At our Dementia Resouce Center Clinci consider the occurrence of delirium after general anesthesia to be a common dementia risk factor for later dementia, but certainly not always. Taking sedating anxiety meds for many years has been found to be associated with a higher subsequent dementia risk. 

Q. How does a company support a worker living with dementia?

A. This depends upon the job’s tasks, work environment, and several other factors that need to be considered for each person involved. Most good companies today really value their hard-working and effective employees and are willing to make accommodations to keep their employees working as long as they remain safe and reasonably able to do the work required in the environment at hand.

Q. How can you tell if it is lewy body dementia or Parkinsons and the difference for treatment?

A. This can be challenging since both can occur together quite often and can start with just a symptom or two that does not quite meet diagnostic criteria. It is clinical observation and some testing over time that will eventually make the diagnosis. If typical Parkinson’s symptoms start several years before any dementia symptoms, then they are usually diagnosed as Parkinson’s disease once they meet adequate criteria.

Q. How to advocate for a loved one who lives in memory care units?

A. Always be civil and respectful. Remember, no one could ever take care of Mom or Dad as well as you. If you are concerned about care issues I suggest talking to the facility supervisor or leadership at a time remote from the time of whatever happened to make your case for your loved one. 

Q. Would love to learn more about what you’re learning.

A. Please explore our DCAN website and Facebook page for more information. Books by Dr. Dale Bredesen or his Apollo website would be a good start. We also host events twice a year. At our Summit, which happens every May, we share lots of information about the latest research and innovations for dementia care. I would recommend attending that event, if you can. You can also watch the replay for our last Summit on our youtube page.

Q. Are there any support groups for caregivers in Little Falls, MN?

A. We are unaware of a support group in Little Falls, but there is a Memory Café. Here is that information.

Connections Café
Various locations throughout Little Falls, MN and Pierz, MN
Third Wednesday of the month from 1:00 pm – 3:00 pm
For more information call: Katie: 320.468.6451 ext. 321 

Q. What slows dementia?

A. We teach about improving dozens of dementia risk factors at our Dementia Resource Center Clinic when working with our clients and caregivers.  If clients are willing to make the needed improvements in many health habits and are at an earlier stage of dementia or mild cognitive impairment then there is reason to hope that their symptoms might improve some and be less severe going forward. I recommend watching the replay of our Summit from May which has a lot of great information on this subject. You can find the replay on our youtube page. 

Handwritten Questions Submitted:

Q. Looking for respite services overnight and weekends.

Call our DRCC at (320) 640-6726 to talk to Tami Kolbinger. Or call Senior Linkage at the Whitney Senior Center. Or check the Dementia Resource Directory on our website. These resources will help point you in the right direction for options.

Q. The need for early awareness.

A. Experts keep talking about “early detection” but most are just now starting to believe in the importance of dementia risk assessment followed by a detailed plan for risk reduction that we feel is a crucial first step for dementia treatment of any kind.

Q. Is there scientific-based evidence, research that supports the benefit of Ketogenic diets, supplements with MCT oil that benefit patients with dementia?

A. Ketosis and ketosis assisting products probably would be beneficial if the subject eats a good low-carb diet, exercises, and has no medical problem that says they shouldn’t do it. They would also need to adhere to all the dementia risk reduction recommendations that we discuss at our clinic evaluations. Not all agree on this, especially the companies that make pills for weight loss and diabetes, but many studies back up the value of ketosis done right.

Q. What are the resources for making a long-term care decision if the person with dementia is solidly against it?

A. It’s best not to wait until their dementia is so bad that they can no longer resist. But rather take them to a nice place that you have researched and visited yourself. If any of their friends live there, have them be there when you bring your loved one there for a visit. Maybe it could just happen to be during one of their fun events or a party. Maybe they have a little garden that residents can enjoy, etc.

Q. What is a colonurgent?

A. I think you mean “cholinergic” or “anti-cholinergic”.  These terms describe a chemical process that helps brain cells send messages to each other (cholinergic). Drugs like Aricept facilitate this process by preventing the normal breakdown of this chemical in the brain. Other drugs used for other reasons can sometimes have just the opposite effect (anti-cholinergic) that can make dementia symptoms worse and interfere with the action of drugs like Aricept.

Q. Aricept- When is it recommended?

A. This drug is usually tried early in the course of dementia but not indicated for mild cognitive impairment – but often used like this. In the trials for approval of this drug the placebo group did almost as good as the Aricept group, meaning that it had a quite modest treatment effect. 

Q. Can you comment on the advantages/ disadvantages of long-term care insurance? My experience is that many families are not able to benefit due to requirements of multiple declines in ADL’s and delay before benefits can be claimed. This is especially true for dementia patient son hospice care.

A. You should probably talk to your insurance agent, accountant, or attorney for this advice, but when your loved one is tested for ADL’s make the tester aware that they should be brutally honest if your loved one is really dependent on a caregiver for each ADL in order for this coverage to kick in.  Of course, you need to be informed of the terms and fine print of your loved one’s policy.

Q. Mental Health is a building block for caregivers! Does DCAN have resources for caregivers in the area of therapy, specifically with therapists that deal with caregivers life transitions?

A. At our clinic, we are in the process of setting up a dementia-informed counseling program to deal with the unique issues that pop out after 50-60 successful years of marriage or partnership when dementia symptoms get in between and the relationship and caregiver health suffers. We hope to eventually train other counselors to do this type of intervention therapy. Please stay tuned for more details as we get ready to launch this service.

Q. What are the most important questions you suggest families/caregivers be asking after a diagnosis of dementia?

A. Ask if the primary care clinician is comfortable to assume the dementia care. If so, our clinic is ready to collaborate with them for ongoing care. If not, consider referral to either a primary care or specialist (neurology) clinician who is OK managing their dementia care.  Also, ask for a dementia risk factor assessment and risk reduction plan to be done before any prescribed therapy is started. Ask about the most likely clinical course expected for your loved one and how best to keep them in their own home as long as possible. 

Q. How much should a caregiver push a loved one to be social and active, when they are perfectly content to sit and listen to the radio or watch TV?

A. Usually they will want to do whatever you are doing. Be social with them and others at every opportunity and set an example. Introducing them to others at their congregate living facility might be helpful. Get the conversation going with topics your loved one is interested in. Group exercises would also be helpful if offered where they live.

Q. How important is nutrition in dementia prevention? Can you be specific?

A. We spend at least an hour on nutrition during our clinic evaluations. We cover low carb, low sugar, no high-fructose corn syrup, healthy snacks like walnuts or macadamias, pasture-raised eggs, grass-fed beef, time restricted eating, keto-enhancing products like MCT powder and coconut oil and many other items during our evaluations. If you are interested in an appt, you can call our clinic at (320) 640-6726. You can also watch the replay for our Summit event that we held back in May. We shared a lot of information regarding nutrition. You can find the replay on our youtube page.

Q. Can dementia run in the family? How do you get tested for 4Dgene?

A. I think you mean the ApoE-4 gene. Ask your primary clinician to order it and be sure you can afford the cost if your insurance won’t pay for it. Dementia does run in some families, but what is inherited is more of a tendency to have inherited bad family health habits like smoking, lack of exercise, and sleep apnea rather than inheriting a specific gene per se. You can overcome the expression of an ApoE-4 gene if you fix all your dementia-contributing health habits.

Zoom Questions Submitted:

Q. Will we have the opportunity to access these slides after the conference?

A. Yes, they are now on our website. Go to: https://dcan-mn.org/conference/ 

Q. Can you use hospice if your loved one lives in an assisted living facility?

A. In our experience, our local hospice providers are very helpful and will respond to your phone inquiries about coverage under specific circumstances. Call any of them for help. Some are listed in our website’s Dementia Resource Directory. Go to: https://dcan-mn.org/dementia-directory/