What preferred solutions do you rely on to care for AD, early to late stage?

mywillow

Hi everyone, I am on the younger end of the spectrum but my grandma passed last year from AD and my mother (70) is starting to have some cognitive troubles (forgetting, stopping mid-sentence). I want to do everything I can to help her and have recently moved back home with her and have put her on a regimen.

I was wondering what tools have you used to guide care best? Do you just rely on medical professionals? Do you rely on peers? What do you wish you had to care for your loved ones (e.g. coaching on diet, exercise, wearables to track cognitive decline)? Would love to do more so I can prevent my mom and the rest of my older family from having the same fate as my grandmother.
- Ideally, I'd rather not sift through tons of websites, etc. to learn what to do and how to track progress.
- I have found some apps like Kinto Care, but it seems like it's more work than help ("Individual Homework") for the community. Are there any others?

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towhee

Hello mywillow, welcome to the forum. You have landed on one of the boards that does not get much traffic, in the future you might want to use the caring for a parent or general caregiver board.

Your grandmother had late onset AD, and while there might be a slight increased risk for your mom it is not wise to assume that all problems are related to dementia. If she has not done so, please get her an appt with her primary care doctor for a checkup. As we age, there can be problems with thyroid, low sodium, depression, etc. all of which can have symptoms similar to AD.

You asked who we rely on- I use reputable non-profit, educational and governmental organizations, some for-profit dementia educators, doctors, peers. You can ask forum members for "recommended sources for a beginner to start with" You will get about 10 that most people recommend. The thing about caring for someone with dementia is that there are a lot of moving parts, and over time you will need to do a lot of information gathering. I suggest you start with the book "The 36 Hour Day". As for apps, I am not familiar.

Victoria is right, no one has a treatment for dementia, the medications we have are geared to delaying visible symptoms. As to diet and exercise, what is good for the heart is good for the brain, so mediterranean diet and moderate exercise to increase heartrate, (check with her doctor first) staying social etc. This is known as "best practices". People keep coming up with various supplements etc., general advice is don't waste your money.

As to "wearables to track cognitive decline" No, Just no. You are going overboard here. Look, it is one thing to persuade your mom to change her diet a little, see if there is an exercise class with her peers that she might like, take her to a concert or other social activities, all good, but putting her on a "regimen"-- If you get hypervigilant it is not pleasant for anyone, and your mom is likely to wish you elsewhere, and that is putting it mildly. Also, with something like "best practices" the younger you start the better, so you would get more benefit than your mom.

If this is dementia, it is still the beginning stages. Your mom can still be independent and so can you. Don't rob either one of you of that independent time. If this is dementia there will be years and years later on where you will be desperate for a break.

harshedbuzz

@mywillow

Firstly, my sympathies on the passing of your dear grandmother.

Secondly, welcome here. I am sorry for the reason you are here, but pleased you found this place.

In your shoes, I would make sure your mom is screened by her PCP for conditions that can mimic dementia. That person can do a depression screening, MMSE/MoCA (dementia screening) as well as bloodwork to rule out something treatable like hypothyroidism, low B1 or B12 and imaging to rule out something like a brain tumor.

It's critical to do this soon. There are a couple of new treatments recently approved for people with Alzheimer's but only those in the earlier stages so getting her screened and in with a specialist if needed would be prudent.

We relied on dad's medical team (PCP, ger psych and neurologists) for medical advice and took caregiving advice from folks here and in our IRL support group. Best practices in terms of a Mediterranean diet, moderate exercise, limited alcohol, avoiding anticholinergic medications and enough sleep are said to be helpful. My uncle did much of that with my aunt, but I can't say it helped any. After he died, we found closets full of cut-out NYT crosswords in brown paper bags. Most weren't even started.

If you'd be interested in more alternative or complementary approaches, look for posts by Lane Simonion and LarrytheRunner who often post in the Caregivers forum.

HB

jfkoc

Get financial. legal and medical ducks in a row then learn how you can be the best caregiver. Start with Dementia 101. A good text is The 36 Hour Day.

You are going to live within the 4 corners of your mother's reality from now on. There is no changing this.

We will be here to help you along the road but the work will be yours to do and you CAN do it!

Jessy

@mywillow totally understand your question and interest, thats great initiative to seek help.

My mother has alzheimers. Was diagnosed 5 years ago but of course we know that when we see signs, 10 or more years have already pass. Did tons of research and along with her doctors we have gotten to the point in whihc we can say she is doing very, very well and has improved tremendously. Remains at home by the way. She is 69 yo. Changed diet to no processed foods at all. No artificial sweets. No simple carbs which mean all those pastries and readily available to eat stuff. No sodas AT ALL. Changed cooking oils to avocado and coconut and olive. Other oils take two years to leave your system. Why not processed foods? because they will leave more toxins and free radicals in your brain.

As far as medical stuff, she is on brain peptides, mythelene blue, bio identical hormones (yes endocrine system is of high importance for brain health) and a sort of vitamins a supplements. All under medical supervision. The methylene has help her tons. (its an old medication, but no money for big pharma). She is sleeping very well at night. Doing great socially. Her understanding has improved as well. We also discontinued namenda which is terrrible for brian long term, rather use CDP choline, a supplement.

Physical acitivity is super importanc too since the brain needs good blood flow to help mitochondria to heal and perform and help neurons as well and the formation of new neurons.

There is hope, this disease is not the end.