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Opinion extra

Living with undiagnosed dementia


My phone rang and I walked quickly out of the office to start what I knew was going to be a difficult conversation. 

“What’s wrong, Dad?” I asked, despite knowing exactly what was wrong, it was always the same.

“It’s your mother. She’s threatening to move out.”

My heart sank as I sat in the stairwell at work listening to my elderly father describe another crack appear in his relationship with my Mum. 

My Dad and I started talking about my Mum’s dementia about three years ago. We were both noticing small signs. It took her longer each time to leave the house as she searched for objects. She would ask what day of the week it was two or three times a day and at times she would seem confused and irritated.

It took us months of living with her though to understand that she might have a form of dementia and not, as she derogatorily referred to as, just “going loopy”. 

Now, over three years later she remains undiagnosed as she insists she doesn’t have a problem.

Despite a feeling of isolation dominating my parents’ interaction with this condition, they are far from alone. The government estimates that six out of 10 people suffer from an undiagnosed form of dementia.

Most of these people are being failed because they are not given the support they need to go to their GP and ask for help. As Jeremy Hughes, the Chief Executive of the Alzheimer’s Society commented:

“People with dementia and their families often tell us they were fearful of seeking a diagnosis. Anyone who is concerned about their memory should visit their GP.”

This is good advice. There is a plethora of support mechanisms out there for anyone who wants help. 

My parents are fortunate that they have a compassionate, concerned and engaged local GP. Despite his best efforts though my mother sees herself and her health as something that concerns her, not her interfering family and certainly not the interfering doctor.

The vast majority of support mechanisms available are based on the premise that a patient realises they have a problem and that they want help. My Mum represents what my local GP described to me privately as “the difficult 1%.”

While my mother continues to tell herself that her health only affects her, those around her are struggling to pick up the pieces.

Increasingly lost and confused and without any real structure in her life, she has turned a lot of her frustration, confusion, and anger upon my father. When things don’t quite make sense to my Mum, she assumes it must have been my Dad “tricking” her. When she can’t find where she left her bag in their increasingly chaotic house, it is invariably because he has moved it. 

Again though, my parents are not alone. Figures are unclear, but a quick search of internet finds stories of frustrated relatives living with undiagnosed dementia patients.

Sometimes these pressures become too much for my father and that is when I normally find him on the other end of the phone as I sit in the stairwell of my office.  

On this occasion, I finished my conversation by telling my father that I am proud of him and that I am here to support him. In response he sighed and said that he better be off.

Living with someone with undiagnosed dementia is as terrifying as it is confusing. My father lives like this 24 hours a day and I know it tests his patience, his tolerance and his love for my mother.

What I have no idea about though, is just how it must feel for my mother. At a guess, I would say that it must be just as terrifying.   

What I do know is thousands of others across the UK live with undiagnosed dementia and that my parents’ story is far from unique.


Readers' comments (2)

  • Yep-hard time for all, Been there, suffered that, got the scars

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  • i live in a seaside town with a higher than average number of retirees, one of the highest average gp caseloads in the country, and, guess what? a lower than average incidence of diagnosed demntia.

    my heart goes out to all those suffering and caring in silence, but the consultants can only diagnose those referred to them.

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