Hello,
I'm wondering if people on the forum can share experiences particularly on early signs of dementia.
I have no experience of it other than, reading some internet medical articles. All information seems to point to short-term memory loss being a main factor.
How did you differentiate short-term memory loss from forgetfulness? Is it the same thing?
What did you start noticing before it got to a stage where you thought you needed to talk to a doctor?
How did you discuss the situation with your loved one? About going to a doctor, was is hard? Did it backfire?
Does waking up late in the day any indicator?
Some medical articles talk about hearing problems and their connection to dementia. Do people on the forum think they are related?
How do you differentiate certain things from just getting old? And when do they start calling it dementia?
I feel like my mom is sound of mind when I'm talking to her, when she's doing things around the house, she still does these things herself, sews, gets dressed, and cooks. However, there are times where I feel she has lost sense of time. For example, if she's calling me from downstairs, she expects me to appear the moment she's called my name, not even waiting 5 secs before calling for me again.
When out shopping in unfamiliar places or stores with lots of aisles, I kind of feel like she needs to see me close by her; otherwise she looks a little lost.
There's other things like not completing one task before starting another, sometimes where the gas stove is involved. I don't know if this is just forgetfulness or anything to be concerned about, I've done silly things like this myself, I'm sure we all have. I was more worried on this particular occasion, where my mom did not smell anything burning or see the smoke coming out of the stove grill.
There are occasions where things get put somewhere and she does not remember where. So the house is turned upside down until we find it. It doesn't happen often.
At the present time I am putting all these incidents down to just getting older and forgetfulness, because as I'm getting older I'm forgetting a lot more than before. I guess the frequency of certain happenings plays a factor too.
To be honest, I'm clueless about signs to look for and was wondering if other folks could share some of these experiences, what you saw with your loved ones, when diagnosed with early stages of dementia and decide to seek some help from a doctor.
I understand this is a hard & sensitive topic, thanks to all.
Love & Peace.
If someone would to follow my hubby around they would probably say he has dementia, but he's been the absent minded professor all of his life according to his grown children. He will get the names of his kids all mixed up, even call the cat by one of their names.
He's never been good with directions, so he takes me along as I am his human road-map. Forget about using GPS on his cellphone, he needs landmarks, not route numbers.
As for your Mom calling your name from downstairs. I bet she did the same when you were a kid. Any time we step foot back into our parent(s) house, we are just the kids, and what do we know :P
For my Dad, I didn't see any dementia until he would call me in the evening. It was like he climbed into a time machine and went back to the 1940's. Then and only then did I know the dementia was knocking at his door in the form of sundowning.
We didn’t figure out it was dementia until she was about mid stage. She was no longer keeping herself or her house clean. She developed crippling anxiety, and was losing weight from not making meals for herself.
It feels to me like your mom is exhibiting symptoms that are more than just old age. I'd have her doctor do a basic memory test to start with. It doesn't show up everything - like most of the things that were going on with my mom. It's a start and then ask her doc to refer you to someone to do a more detailed study of what's going on.
What a wonderful question!
We usually don’t see it at first. My mom had Parkinson’s disease and later developed dementia.
We may not want to see the ‘little things’ because it’s a scary thought that our parents are experiencing cognitive decline.
So, we don’t even realize that we are in denial.
I had very similar experiences as you.
I was confused because every question that the neurologist asked mom in his office she got right!
Everyone said how sharp she was. She could hold wonderful conversations with others.
Yet, at home there were times when she acted differently. She admitted to me that she couldn’t remember things like before, but I was like you, I thought, well, she’s old and that it’s natural to forget some things.
Just like your mom, she expected me to be there instantly when she called. It didn’t even matter to her if I was in the bathroom. She wanted me that second!
There were a few other things that I look back on and say to myself how did I miss that?
I would tell her to not reach for something on the higher shelf in her closet. She was a fall risk due to Parkinson’s disease.
She would say to me, “Okay, honey. I won’t reach for anything. I will call you to come and get it.” I would say, “Great, mom. I am going to the kitchen to make your tea.”
I would go back to her room to ask if she wanted lemon for her tea, sure enough, she would be attempting to reach for something on her shelf.
So, I said to her, “That’s it, mom. I will move any items that you need on the lower shelf.”
Then she complained that she didn’t want me to rearrange her closet. It didn’t make any sense to me at the time.
I thought she was just being contrary at the time. Now I see that she was experiencing memory loss and confusion.
You are ahead of the game for seeing these signs. It’s confusing and disturbing to see changes in our loved ones. I wish you peace as you continue on your caregiving journey.
Thank you for your answer and taking the time to write back to me.
I hear you, regarding not wanting to see loved ones have problems of any kind, especially where the mind is involved. Everyone want the people the love to be the person they've known all their lives and it's hard to believe otherwise.
I share a similar situation to yours and it's good to know other can relate to the things I mentioned. I smiled when I read about your mom wanting you to be there the second she called you (sorry), but I know it's frustrating as well.
I relate when you asked your mom not to reach up for higher things in the closet and she does it anyway. I've asked my mom countless times not to lift heavy things, get up on a stool to reach for higher things. I told her to ask me if she needs help with anything difficult, but she just tries to do them anyway.
Thank you for your supportive answer, I relate to the things you've mentioned. It's sad to see any problems with loved ones. Thank you Need, for your wishes too.
Love & Peace.
Here is a link from the Alzheimer's website about the 10 Signs of dementia and a fairly in depth explanation of what to look for:
https://alzheimer.ca/en/about-dementia/do-i-have-dementia/10-warning-signs-dementia
This is not a hard or sensitive topic around here, it's what most of us deal with, or have dealt with, for many years with a loved one.
Get your mother tested asap with a mini MoCA or SLUMS cognizance exam and given a number score from 1-30 to see where she falls. The SLUMS is a 30-point, 11 question screening questionnaire that tests orientation, memory, attention, and executive function, with items such as animal naming, digit span, figure recognition, clock drawing and size differentiation. The measure is clinician-administered and takes approximately 7 minutes to complete.
SLUMS scores are interpreted as follows:
27 to 30: Normal in a person with a high school education.
21 to 26: Suggest a mild neurocognitive disorder.
0 to 20: Indicate dementia.
My mother scored an 18 her first test and was diagnosed with progressive dementia which was 100% accurate. Along with memory issues, she was introducing me as her mother, which alerted me to the fact she was having issues. Was she incoherent and drooling? Absolutely not. She was acting quite normal other than having issues with time and memory. Severe problems do not appear until much later on when the dementia is very advanced.
Best of luck to you.
Thank you for the link I will read it.
The advice is very useful and it kind of stuns you, when you read about the experiences of others. The reality of this condition.
Thank you for sharing your experiences with your mother too and things you noticed.
Love & Peace.
That stopped after a while, though, and then it just progressed to her being kind of vague about things, becoming unable to carry on her side of a conversation, and most glaring, the loss of her emotions. She used to laugh at TV shows or something I'd say or cry when the music swelled up at the end of a movie, and one day I realized she wasn't reacting emotionally to anything anymore.
When she didn't shed a tear at my father's (and her soulmate's) death, I knew we'd lost her. She was more baffled than anything else.
This first sign was the inability to complete normal task.
We never received a formal diagnosis but I think she had Vascular Dementia. Symptoms can certainly be related to the area of the brain that is impaired. My mom’s memory issues and repeating questions did not come until much later.
She stayed in her home for 5 years with a hired caregiver to do tasks and then I moved her into my home for the last 5 years. She died in November. I did not notice her repeating herself until she was in my home. In her case, she would be pretty stable and decline almost overnight.
She lost short term memory first and then long term memory.
I wish that I had completed a formal diagnosis. It would not have changed the outcome but would have helped with her care and also helped with my expectations of her progression.
This forum has taught me that each dementia sufferer has a different journey. Each is unique. I wish you the best as you navigate these decisions.
You start looking back and you remember all the little things that you shrugged off as nothing at the time.
There was the slow withdrawal ..but my Husband was not one to talk on the phone, want to go out with people...
There were a few times getting lost but those were explained in several reasonable ways. One time I was with him in the car and because of snow landmarks were missed, there were other times when he "reasonably" explained something.
He was always a "saver, a collector" but then it became more, but he had a logical reason that made sense for the found objects he brought home.
Theft, that was the HUGE flag. He had owned a store for many years and for him to steal was just so unlike him. I remember it would break his heart when he found that items from his store were missing.
The most frustrating thing...our doctor. He kept pushing off my request to test him.
I have read that people diagnosed with dementia often hide signs, symptoms for sometimes 10 years before others realize there is a problem.
Isolation these past few years has done nothing but make things worse. People that may have been showing signs went un noticed because family and friends were not in contact with them. Socialization is so important for our mental and emotional health and to stop that can be detrimental.
And getting a doctors appointment is insane.
Go with your gut. If you think there is a problem get it checked. There can be lots of medical reasons for some of the things you mention. There are logical reasons for some of the things you mention.
The analogy of puzzle pieces and trying to put together a number of different things is a good one. At present my mom forgets things and she's tell me herself, that she's forgetting due to old age, but as you say there's some theories on people with early dementia hiding things for a long time.
Other people may have noticed this with their loved ones, my mom seem to have periods she seem complete fine and sometime seems withdrawn.
I feel the emotion of people discovering their loved ones doing something that's out of character due to cognitive decline. Like theft with your husband. I think it's moments like that, as you mentioned huge flag, when it starts to really sink in.
It's shocking to hear a doctor pushing off requests to perform tests. The people that are closest to loved ones showing signs of dementia should be heard more, they are the ones that know changes that are happening.
I hear you with regarding the last few years and covid19 restrictions. It destroyed many livelihoods and lives. Trying to see a doctor face to face in the surgery has to justified these days, this is before you've manage to discuss your symptoms. It's not something that's just available like before the pandemic.
Thank you again for sharing and your advice.
Love & Peace.
When seizures put him in the hospital in Dec. 2017, the nursing staff saw his aggressiveness (one nurse approached me about leaving our home and arranged for me to speak with a social worker, that's how bad he was in the hospital). When they wanted to release him, I said that I felt some testing needed to be done in view of the major change in his personality and that I was comfortable with him being released.
An MRI revealed frontotemporal damage, so one doctor told me he had Frontotemporal Disorder ("Do you know what that is?" "No, I've never heard of it." "It is one of the ways we now describe dementia.") A psychologist administered the Mini Mental State Exam (MMSE) and he scored 13 (below 17 is severe dementia). Our daughter was there to hear both diagnoses. If she hadn't been there, I'd be sure I made it all up and was the crazy one because neither his neurologist nor his pcp have addressed it other than to do one more MMSE (he scored better three months out of the hospital, 22 that time) and put him on donepizil. His pcp is planning to do a MoCA (Montreal Cognitive Assessment) at his next appointment. Honestly, my husband's health is failing rapidly (heart failure) and I'm not sure he'll make it to the next appointment.
So long answer to your question when I could have just said, "Personality change."
I am glad your daughter was present for the initial examination. When people are caring for someone alone, I realize other people just want to point fingers, not believe what you are saying, so it's good you had your daughter there too. However, just having someone with you is good for support in all kinds of human issues, we all need each other, no matter how strong people think they are.
I will be sure to keep observing my mom for changes in personality and thank you for you answer.
Hearing your situation, it's evident that tough times are still with you. I hope you can hold the cherished moments with your husband close to your heart.
I wish you moments of comfort and support through other loved ones.
Love & Peace.
He became more controlling of my mother, their finances and having to be in charge of everything and everyone. There is no official diagnosis yet. He has refused all medications regarding anxiety, depression and mood swings and even
pain medications for arthritis. It is not easy.
He thinks he is a family patriarch of a sorts. There were so many weirdy events that the hubs and I just thought were "him". We were at a sporting event once and he was insistent that we walk into the park in a certain order with him being first. I told my son to just go join his team. Dad was unglued. I could go on...
I heard him ask my mom"What is her son's name?".
With the Lewy Body I first noticed a change when mother wasn't making any eye contact when speaking to people.
The "peripheral vision" also looking back was one of the first signs. I couldn't figure out why my mother would be in a supermarket parking lot and walk behind a car that was pulling out when she had on hearings aids ($5,000) and cataract surgery.
Teepa Snow who is Occupational Therapist did a video on how some Dementia's when the peripheral vision is diminishing it's like wearing scuba diving goggles. Your loved one cannot see on either side. I know this now but looking back I couldn't figure out what was going on.
Secondly, spatial awareness. A few times my mother almost walked off of a sidewalk. Her handwriting was much small and not centered. Every person is different and with Lewy Body the Executive Functioning skills are noticeable.
Years ago, I literally told my mother pull the car over, give me the keys, you are not driving. Mother, at that time was on the blood thinner Coumadin--Warfarin now Eliquis. I had the responsibility to protect her and other people on the road. Her gage when driving behind another car was off. It would have been an accident waiting to happen.
A trip to a Geriatric Neuro Psych Doctor can assist you with testing and 6 month follow ups so you can compare any decline of if the patient is stable or thriving.
Sequencing of events were also difficult or more than one directive.
A structured routine, good nutrition, socialization, early to bed, minimal tv, good lighting are all helpful.
An Upwalker Lite is much better than the gray aluminum walkers that makes the elderly walk all hunched over. Exercise is crucial. Of course, running everything past your doctor.
Hope this helped!
The large number of times a night to go to the bathroom was thought to be a UTI. It wasn't a UTI. My Mom could sleep eat, sleep walk, sleep pee and sleep talk and only remembered a few. She used to get into arguments at night with her caregivers and sometimes not remember it at all. She'd be grumpy in the morning and have no idea why, however, the caregiver would tell me about the incident just in case she mentioned it. One time, she woke up in the middle of the argument and blamed the caregiver for waking her up.
She pretty nearly passed all the cognitive tests they gave her, even the ones that counted down from 7 and remembered 4 objects 5 minutes later. However, she could never draw a clock correctly. The problem with the tests is that we didn't have a baseline. Her drawing has always been horrible so we didn't think too much about it.
It wasn't until she went to an AL for respite care. Within 2 days, it was diagnosed as dementia instead of forgetfulness. She would ask the same questions to the staff over and over again...when is dinner, when is lunch, they would give her a snack and she would say that she never received it. They would ask her to go back to her room. She did, then was back out less than 2 minutes later.
That is when we realized that the frequent trips to the bathroom at night, were signs of dementia because she thought she needed to go to the bathroom, and her brain couldn't recognize or remember that she had just gone to the bathroom.
During those days, she could follow along with the plotline of a movie. What we didn't know was that it was movies that she saw a long time ago and saw over and over again.
So we took her to a new movie and she said it was horrible and the plot was confusing. She was very skillful in hiding her memory issues and we wanted to give her the benefit of the doubt. So we never told her why the next time she was in respite, why she was in the Memory Ward.
When she got to the point where there was a puddle of liquid on the floor and she said that it wasn't hers and she had no idea where it came from, I became alarmed. However, the worst was when her bed/clothes/chair were wet and she said it wasn't her, that's was the confirmation. She knew that I'd make her change her clothes and change the bedding if it was wet, so she did her best to try and hide it. That is when I told her. Of course she called us all liars and only she knew the truth.
This from a lady who would be almost OCD about sanitation.
It was hard to know. However, in my case, I really didn't care whether it was forgetfulness or dementia or some other memory abnormality. All that mattered was figuring out what she could do by herself, what she could do with help, and what she was not capable of doing.
My mom had a simple phone initially and when it was time for a new phone my daughters said, “Get grandma a smartphone. She will do fine and we can send her photos. She will love it, Mom!”
My response was, “She doesn’t need that. I show her photos from my phone.”
My girls encouraged me to allow her to try using a smartphone. I gave it a try. At first she did really well. She even started taking photos of all of us and the dog. My girls were teaching her to text too! LOL Texting became difficult for her as her Parkinson’s disease became worse.
Then she started playing with all of the features and was accidentally blocking phone numbers. I ended up getting calls from her brother saying that she wasn’t answering her phone. Yep, when I looked at her phone she had his number blocked.
We went back to the simple phone and eventually she wasn’t able to use that either. She was fortunate in regards to not developing dementia until much later in her life. She lived to be 95.
It is difficult to see the earliest signs when we are used to a parent who is sharp. At first I thought mom was just being contrary, now I realize that it was the beginning of memory issues.
There are specific psychological / medical tests a person can take.
It is likely best to have this testing done by an independent person to avoid whatever triggers a family member may bring up in a person being tested. Stress, overwhelm, anger - so much can get mixed up in responding.
Gena / Touch Matters
https://aviv-clinics.com/blog/brain-health/early-signs-of-dementia/?utm_source=google&utm_medium=cpc&utm_campaign=17856096207&adgroupid=142106508639&utm_content=632136967088&utm_term=&gclid=Cj0KCQiA-oqdBhDfARIsAO0TrGF3jkGgi4aHGlfweM3w4AB9FTpICt8zgJf5cLAVvcvMEXKi0RcUHfcaAq7dEALw_wcB
Gena / Touch Matters
Good luck - this can be a challenging time.
The best way is to have a doctor help you in this matter.
Fast forward: she had a number of illnesses, eg. shingles, compression fractures from osteoporosis, etc. Obviously v.painful and distressing. Every time she was ill, I could see her deteriorating. She still kept doing her normal things eg. shopping, Tai Chi class, driving - but after a real bad bout of back pain in 2013, things went downhill. She lost interest in her favourite TV programmes. Also, hearing loss accelerated the process. When our financial adviser came round, she'd just stare into space, getting more and more irritated - she had no idea why he was there.
All this time I think I was in denial, cos she could still chat with her friend, play her piano and seem like her old self. She got noticably bad in the last 3 years or so - becoming paranoid, convinced there were other people in the house, getting very anxious when I and my hubby went out. Getting up in the middle of the night, sometimes asking me who I was - but this was in the later stages. I think it was only when I read a psychiatrist's interview with her (requested by the care home she was in for the last few months) that I accepted just how bad her dementia had become. She could still hold a conversation, just, but her memory was GONE. (She died this year age 98).
This is all to say the early signs can be hard to spot. Her confusion over bank letters - even tho she continued keeping meticulous expenditure records - was an early red flag. After that, it's hard to know to what extent her ill-health contributed to her mental decline.
best.
Some folks -- not having experienced a LO w/dementia -- may assume it is just "forgetfulness" or "inability to remember" or "putting things in the wrong place" or "getting lost" type behaviors. Instead, there are a myriad of other things such as general confusion and difficulty with mental processing (such as the confusion over having two bank accounts at the same bank or letters received from the bank). Behavioral issues, especially "big changes" in behavior (becoming nocturnal, late in the day agitation or sundowning, frustration/anger outburst). Communication difficulties, especially difficulty with nouns. And interestingly, gait issues.
Here is an article about "gait" issues being perhaps diagnostic of greater later risk for AZ. Watch the video, the woman is 72 years old. If just walking, the woman has no problems. But when she walks while counting backwards, it falls apart as the brain is having a hard time processing two things at once.
https://www.nytimes.com/2012/07/17/health/research/signs-of-cognitive-decline-and-alzheimers-are-seen-in-gait.html
All to say, many issues may be seen by you that raise concerns and YES take this seriously. And YES if you can get your LO assessed, go to a geriatric physician who can work out referrals to a neurologist, a geriatric psychiatrist a and geriatric psychologist (for the brain imaging tests, to rule out underling medical and mental health issues, and for the battery of psychologist test to get an accurate diagnosis).
The discussion to move forward to be accessed can often be very difficult for lots of reasons: denial, fear (not wanting to know), lack of awareness, on and on. My mom had something called "Anosognosia," that made her entirely unaware of any health or cognitive issues; making it impossible to discuss what I was seeing as clear evidence of cognitive decline to the point I was sure it was dementia (later diagnosed as such). Here is an article on this problem:
https://my.clevelandclinic.org/health/diseases/22832-anosognosia
I have found the "Better Health While Aging" site, articles and videos helpful as part of my learning about dementia. Here are two that you might find helpful.
https://betterhealthwhileaging.net/6-steps-how-to-help-aging-parents-get-care/
https://betterhealthwhileaging.net/cognitive-impairment-causes-and-how-to-evaluate/
Worth trying to discuss first with your LO, more by asking what they see or are feeling and expressing concern, rather than "you need to do.....". Get the contact information for their medical providers and call your LO'a primary doctor. HIPPA (health confidentiality) confuses people. YES the doctor cannot tell you anything unless your LO has given them permission to do so; but YOU CAN still tell them things about your concern and what you are seeing and ask that they consider a full board dementia assessment. They do NOT need to say yes or no, but you can convey info. so do that especially if your LO is oppositional to discussing this.
Also, as others have said, it would be good to get all the legal paper work in place too: durable medical and financial Power of Attorney, advanced directives, and list of accounts (bank, credit cards, life insurance, IRA, 401K, pension, utilities, etc). And set up on-line access so if you need to take over, you can.
Elder care attorneys licensed in your state can help with this paperwork and planning. And good to have a plan, even if it is not dementia. At some point, something happens and scrambling in an emergency is never the best option.
Best of luck with this.
One last thing: Mention these changes to her doctor on her next visit, and each subsequent visit so they can be documented. If and when you apply for Medicaid, your doctor will need to do the certification forms - and those records will be accessed.
We are here for you!
As far as hearing, yes. It does contribute.
If you feel that something is off with your mom......believe your intuition.
checkup. Because you are ## this year they also test blah, blah and blah. Better safe than sorry .. right, mom? We can get lunch at your favorite place after.”