I think my dad has dementia but no one else agrees with me

[PBB]

I come from a medical family and am studying in the healthcare field myself so have worked a lot with people with dementia. Since studying I have noticed a big decline in my dad's memory/cognition and it reminds me of my dementia experiences.

Memory - he keeps his entire week planned and written out when my mum is away because she can't be there to remind him of things. He has forgotten certain significant life events like a family member having a hospital a few years ago. He gets all my friends mixed up and where and when I am meeting them.

Cognition - he is a very clever man and still can answer pretty much all the questions on TV. but has increasing difficulty with word finding and seems to process things slower / needs things repeated to him.

Mood/behaviour - he gets more easily agitated or angry with people than before, he was always a calm man. I received some bad news recently and he showed no empathy and carried on asking me unrelated questions. He tells jokes which are not appropriate to our family including innuendos and explicit language. He is very demotivated and barely leaves the house, watching Netflix all the time when he's not working. He has not been getting along with his boss at work either

Planning - he finds planning and multi tasking very challenging especially if things are slightly complicated. He also is obsessive over wearing gloves while driving.

I just don't know what to do because the doctors in my family don't seem to think anything is wrong and are just putting it down to aging but I'm sure there is more going on.

 

[Violet Jane]

How old is your father?
Do you live with your parents / see your father much more than the doctors in your family?
What does your mother think?

 

[Jessbow]

From wht you describe, I am erring on 'something' but not perhaps dementia.

Depression?

 

[canary]

I have exactly the same problems with OH.
All of these things - apathy, inappropriate behaviour, loss of empathy, difficulty in processing and language are all things that are governed by the frontal/temporal lobes of the brain.

We cannot give diagnoses on here - it requires tests to rule out any other problems, tests of brain function (especially neuropsychology tests) and scans to pick up any areas of damage/shrinkage, but I would encourage you to look up Frontotemporal Dementia (FTD) and see if it rings bells.

 

[Jaded'n'faded]

I feel your frustration. I spent years telling family that mum had dementia. I was dismissed, put down, even ridiculed ('It's like you WANT her to have dementia... Why?')

Unfortunately I was right but the denial from family was extremely unhelpful. Even when she fell getting off a bus, ended up in hospital and her dementia took a nosedive (necessitating a move to full time care) they still didn't believe it, saying the fall had caused her memory loss, etc. In fact, mum could have been a poster girl for dementia - she did all the classic things, had all the classic symptoms. Dementia was on my radar because I went into early menopause and the brain fog I suffered made me think I had dementia, so I had researched it a lot years before. But mum hadn't seen a doctor for years and was otherwise healthy so family decided she was 'just getting a bit old'.

It's incredibly frustrating when others don't see what you see. I'm not sure if the medics in your family are GPs or specialists but I do know that many GPs have very little idea about dementia and often go along with the 'getting a bit old' assumption. You might want to direct them to the latest Alzheimer's Society advert which points out: 'This isn't getting old, this is getting ill.'

I'd like to say my family came round when mum was eventually diagnosed and in the 3 years from then to her death. But they didn't really. There was no, 'We're sorry we didn't believe you, you were right and we should have listened.' A couple of them still believed the bump on the head had caused it all and that she was perfectly OK before that. But I was the one who'd had years of paranoid phone calls, obsessions with money, appliances 'breaking' and mum not being able to operate her computer/phone/TV, etc. anymore.

All I can suggest is to keep notes of his behaviours so you have a full record rather than just telling them bits that they will dismiss as anecdotal. Good luck.

 

[PBB]

How old is your father?
Do you live with your parents / see your father much more than the doctors in your family?
What does your mother think?

He is 59. I don't live with them, I am at uni and I feel that every time I go back home I notice more of a decline. I have spoken to my mother and she agrees that there perhaps is something going on, but because he is holding down a high paying job he must not be "that bad" so it's not worth pursuing a diagnosis.
I just worry that we are missing the opportunity for treatment now by letting things get worse over time, I know we can only delay progression but at least it's better than just ignoring it..

 

[PBB]

I have exactly the same problems with OH.
All of these things - apathy, inappropriate behaviour, loss of empathy, difficulty in processing and language are all things that are governed by the frontal/temporal lobes of the brain.

We cannot give diagnoses on here - it requires tests to rule out any other problems, tests of brain function (especially neuropsychology tests) and scans to pick up any areas of damage/shrinkage, but I would encourage you to look up Frontotemporal Dementia (FTD) and see if it rings bells.

Thank you, this is really helpful. It does sound quite familiar to be honest

 

[PBB]

I feel your frustration. I spent years telling family that mum had dementia. I was dismissed, put down, even ridiculed ('It's like you WANT her to have dementia... Why?')

Unfortunately I was right but the denial from family was extremely unhelpful. Even when she fell getting off a bus, ended up in hospital and her dementia took a nosedive (necessitating a move to full time care) they still didn't believe it, saying the fall had caused her memory loss, etc. In fact, mum could have been a poster girl for dementia - she did all the classic things, had all the classic symptoms. Dementia was on my radar because I went into early menopause and the brain fog I suffered made me think I had dementia, so I had researched it a lot years before. But mum hadn't seen a doctor for years and was otherwise healthy so family decided she was 'just getting a bit old'.

It's incredibly frustrating when others don't see what you see. I'm not sure if the medics in your family are GPs or specialists but I do know that many GPs have very little idea about dementia and often go along with the 'getting a bit old' assumption. You might want to direct them to the latest Alzheimer's Society advert which points out: 'This isn't getting old, this is getting ill.'

I'd like to say my family came round when mum was eventually diagnosed and in the 3 years from then to her death. But they didn't really. There was no, 'We're sorry we didn't believe you, you were right and we should have listened.' A couple of them still believed the bump on the head had caused it all and that she was perfectly OK before that. But I was the one who'd had years of paranoid phone calls, obsessions with money, appliances 'breaking' and mum not being able to operate her computer/phone/TV, etc. anymore.

All I can suggest is to keep notes of his behaviours so you have a full record rather than just telling them bits that they will dismiss as anecdotal. Good luck.

I'm so sorry to hear about your mum. It is really frustrating when you feel like you're not being listened to with things like this. I think a lot of family members just go into denial or ignore the issue as a coping mechanism and that's what my whole family is doing basically. I'll keep notes from now on, thank you for sharing your story with me

 

[Violet Jane]

Things will come to a head at work eventually when your father starts underperforming and faces a capability hearing. Depending on how he behaves at work he might face a disciplinary hearing. Your mother might be hoping that he can get to retirement age or close to it and doesn't want to 'rock the boat'. If your father drives she might be worried about him losing his licence and all the consequences that could flow from that. The advantage of your father going to the doctor now is that if there is another medical problem which is causing the changes in your father's cognition / behaviour it can be treated. This could prevent your father from losing his job.

In truth, no medication really slows the progress of dementia and the limited medication that there is is not suitable for all types of dementia. Typically, it is prescribed for people with Alzheimer's Disease.

You have expressed your concerns to your mother and I think that you have to be led by her. I would leave the subject for the time being and see how things go.

 

[Dunroamin]

just don't know what to do because the doctors in my family don't seem to think anything is wrong

Oh how this resonates with me! I live in a multi generational house of medics (including a retired self.) I guarantee none of yours will have the expertise to diagnose this and certainly not the personal experience of dementia taking things away from them.

The diagnosis is not straight forward and other disciplines plus scanning are required. Please show them this post. Most doctors are either generalists, or in our family case, in highly specialised fields. None believed I had a problems including my GP.

I have now come to an understanding with my GP as he accepts I am (unfortunately) the expert in this. Let us know how things pan out.