Let’s share experiences on early symptoms of dementia

It’s been a while since I posted, mainly because I had several ideas and was not able to decide which one to pursue, but I’ve finally picked one idea to give a try, related to a major concern area I have: simple, effective ways to share experiences.

When I talk to caregivers, they often say they’d like to share their experiences, but don’t know how to. I’ve seen some Facebook forums that are excellent mutual support communities, but their contents are not visible to the public. Dedicated bulletin boards, too, are often private. What we also need are ways where caregivers can share publicly, even if they don’t want to reveal their identity.

So I’m trying my idea here to gather your experiences on one topic. If it works, I may repeat this for other topics.

I am inviting you, family members and friends of persons with dementia, to write a comment about some changed behavior shown by a person before he/ she was diagnosed with dementia. Perhaps this was something that made you contact a doctor. Or perhaps the behavior just felt odd, and it was only much later that you wondered whether that had been an early sign of dementia.

Add your comment to this blog post. It won’t take much time. Just describe an incident in a way such that someone reading your comment can picture it. So, instead of saying, “my mother’s behavior changed”, tell us something we can imagine, like: “My mother used to love socializing and also planning the menu for visitors. Then she stopped planning menus. She even began avoiding people. Maybe she had started facing dementia type of problems.”

I know many of you have hesitated sharing in some forums because of privacy concerns. Or you didn’t know an easy way to share. If so, posting a comment below may work for you, because you don’t have to give your real and full name; use a pseudonym or give part of your name or your initials. And your email id will not be visible when your comment goes live. Your privacy is ensured when your comment is visible.

So it’s over to you…

Please remember that every shared experience matters. The few minutes you take may help some other caregiver. It may help someone realize that the behavior they are seeing may need investigation.

Here’s all you need to do: Just scroll down a bit and you’ll find the place where you can leave a reply. Share any personal experience of changed behavior of a loved one before he/ she was diagnosed with dementia–the sort of behavior that, looking back, you think might have been an early warning sign of dementia. (And don’t worry about how well you write and all that, just write whatever comes from your heart 🙂 )

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

4 Responses to Let’s share experiences on early symptoms of dementia

  1. VK says:

    My mom-in-law was diagnosed with Alzheimer’s almost 2 years back..She is now 84 yrs old, bedridden for the last 4 months after a few falls.What made us take her to the doctor first was her on and off spells of black outs after which she appeared very disoriented. These were ischemic attacks which we came to know after the MRI.But later thinking back, I feel there were some symptoms like she used to deny she knew some information, when we would have already told her & she would get upset easily. Other times, when she used to clear all the vessels to stack them in the cupboards, she used to just leave half undone & spread on the counter & some used to be in the wrong place. There were other changes in behaviour too. She was always a simple person..was never one to want material things in life. But over a certain period she suddenly became obsessed about buying saris all the time. One day my husband also realised that something is not OK when just after a week of buying her 4 saris, she asked him to buy something new. She actually did not remember. Another aspect – She is very good at sketching..We have many of her pencil/charcoal sketches/portraits of people she has made over the years..but around the time or before she was diagnosed, she had lost all interest in sketching. We tried to get her to do it..but No, it did not excite her anymore!

    • vasundhara dutt says:

      Hello VK
      I read your blog.I noticed how your mom in law lost interest in sketching.Tell me does she enjoy family company.Since my mother has lost interest in all things that kept her busy for years like knitting or cooking etc. Now its not only ignorance towards these things but even family visiting her doesnt bring a smile on her face.

  2. Gowri Manian says:

    Our mother, who is 85, had worked till retirement.She had fell down,years back,underwent hip replacement surgery, and with movement restricted, was using a walker even to the bath room.Always been a very quiet and calm person, kept to herself in her room, so nothing unusual. Her life inside the room started to have weird changes.It was so gradual, that we didn’t notice anything, or we were convinced with her excuses. Being an introvert she cleverly concealed them. We used to take her to beach or park , which she started to refuse saying that she was tired.She had her own phone, which she used to talk to her friends or her other children etc.She started to look up to me every time the phone rang,, unsure of what to do.Thought she was avoiding talking because of hearing problems,Then she slowly needed help with the remote, while watching TV. There was her post retirement office party for the 80th birthday, where she could not recognize anyone, . A voracious reader of novels, started avoiding books or magazines saying that her eyes burned while reading.Wearing spectacles right from the 15th year, she had started removing them, saying that they were as good as not being worn.Usually independent, packing her things by herself while visiting her other children, started to forget, even to do that. She always wanted to be back in her own place, giving some excuse or the other, when asked to extend the stay. .Periodical incontinence happened, which were considered accidents, due to her immobility.Obsession with one or two saris, and always wanted to wear them, while having difficulty in buttoning her blouse. When at this stage, we took her to the Doctor, he diagnosed advanced dementia, and that she was beyond come back,We had learnt a new term, i.e. ‘DEMENTIA’

  3. vasundhara dutt says:

    Lives changed …….
    My mother now 79 was always busy with house hold chores.Cooking her best for relatives, looking after family etc but her behaviour showed changes after my father passed away 8 years back.After that I took her along with me since I was her only child.My kids had always seen her as a loving person,a giver ,a self less grandmother.
    But soon we began noticing changes in her behaviour.She began forgetting names, phone numbers etc.Later she became more protective towards herself, her things, her comfort.I thought she is missing my father but did not realise dementia was stepping in…

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