What did you notice with early stages of dementia with your loved ones?
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.
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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.
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.
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.”
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.
Looking back and connecting the dots, I saw it at a huge party we held for her extended family. She was an elegant woman, who in her younger years would make dinner for six on Fridays just for something to do. When we held the huge party at a remote site, with catering and entertainment, I commented to myself that she showed up as the best dressed homeless person I knew. After the diagnosis. I now know that was when it was obvious. The diagnosis did not occur for another year and a half. In the interim, she had a car wreck, incontinence, and began having trouble walking.
In hindsight, the biggest indicator of dementia was belligerence. Nothing was good enough, there was no softness to her, she was harsh, critical and the littlest thing set her off. Of course, the harshness and criticality would set me off. It became a downward spiral. I wish I had learned early to purposely soften myself. I also wish I had learned earlier how to redirect her thoughts and not answer her questions or try to reason with logic. When people with dementia get a thought in their heads it stays there. They need to be redirected, not answered.
He is diagnosed with Frontal Temporal Dementia. I've learned a lot about it too.
Hang around this forum, lots of people here have lots of very, very useful information to offer. Get all the testing you can for your Mom. Neurologist appointments are harder to get than hen's teeth. Do everything you can not to miss one, or you could be waiting 6 months to a year before another one is open. Once you know what type or mixed type of dementia your Mom has, drill down and find out more. Use reliable web sites, Alzheimers, Mayo Clinic, Sloan Kettering-their information is checked and fact based with the big name hospitals/organizations. Check your Mom's insurance, ask her doctor's office if you're not sure, if the insurance will cover a PET scan, quite useful and accurate for diagnosis of the brain, if the neurologist deems it important to get done.
Financial/legal planning is a must. A very hot topic here, again great information from lots of posters, which I've saved to use for later planning and fine tuning those plans.
This is not easy. This is not for everyone. Do not think you have to do this, if it becomes too much. Plenty of support on this forum with that, lots 'n lots of collective wisdom, about this.
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.
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.
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.
If you feel that something is off with your mom......believe your intuition.
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