The dementia diaries. Spotting the early signs.

Call me Sassista Three. I am not alone – far from it – but I feel it. I live in the twilight world of my mother’s final phase of dementia. Every morning, I wake and wonder if this will be her final day in a life which is now a mere confused existence.

But the heart and lungs long outlive the mind and so she goes on.

Sadness aside, I have learned much, and so here begins the dementia diaries in which I will share my experience and what I have picked up through research and experience over the past four years.

First a few facts

  • Research by the Alzheimer’s Society tells us that 225,000 people are diagnosed with dementia every year. So how many are living with undiagnosed symptoms?

  • In the UK alone, 850,000 people live with dementia.

  • Every year 1,340,000,000 hours (that’s 150 years in people hours) is spent by relatives caring for people with dementia.

  • The cost of unpaid care is £11.6 billion.

  • 43% of carers get little or insufficient support.

For more facts log into the Alzheimer’s society infographic https://www.alzheimers.org.uk/infographic. It will shock you - and these are only statistics for the UK. The sadness of all is that every person with dementia has an individual care cost of £30,000 and only £90.00 per person is awarded for research. As people live longer and lifestyle impacts on our brain, we are hurtling towards a social crisis.

The early signs and symptoms and what I should have spotted.

Five years ago I noticed changes in my mother’s behaviour. At first they were easy to ignore. Don’t we all get a little forgetful? She had always been a worrier and so more anxiety could be dismissed. She was a home-body, and so no wonder she was anxious about getting lost in town. I am an only child and close, so of course she would become more demanding of my time and keep asking when I would be back. I accepted all of this until my father noticed periods of staring into space looking ‘gormless’.

We kept going for another few months. There were many reasons for not mentioning the changes. These included:

  • Fear of frightening her. She had always been terrified of mental illness and the word dementia made her cry. It seemed too tough to mention.

  • My own fear. Like the woman with a breast-lump who refuses to go to the GP for fear of ‘bad news’, I kept minimising all the signs. Instead I bought vitamins – B, C, E, and Bach’s Rescue Remedy. All this was a desperate race away from reality and even more desperate hope that there was a simple answer.

When the anxiety increased, I took her to the GP. Immediately, he advised a consultation at the memory clinic and we started the process of memory testing and CT scans.

I cried with relief the day the consultant stated she thought my mother was depressed rather than suffering dementia. Seretonin was prescribed and so began another 18 months of attributing symptoms to low mood rather than dementia. I look back and kick myself for not going back to the GP with my concerns when the serotonin seemed to stop working. I beat myself up for all those times I told my mother she was fine and to calm down. I hate myself for feeling frustrated with her. But like any child, I wanted my mum to be OK.

So learn from my mistakes. If you see any of the following symptoms which are out of character in your parent, it is time to woman up and face reality.

  • Losing items around the house

  • Difficulty following instructions or a conversation

  • Difficulty or lack of confidence with tasks they have done for years

  • Forgetting words or names – or knowing the word but unable to say it

  • Forgetting recent conversations, appointments and anniversaries

  • Getting lost in familiar places – or fear of being lost

  • Making comments such as ‘I don’t know what I am doing’

  • Irrational fear about you going out or being away for long

These are symptoms of mixed dementia with vascular symptoms. However, there are other forms of dementia including Alzheimer’s, Dementia with Lewy Bodies, Fronto-temporal dementia, Korsakoff’s syndrome – and the list goes on. Some symptoms are common to most, and others are specific.

Please, if you have doubts, do not turn a blind eye and hope it goes away. Your parent will be trying to dismiss the symptoms even more than you, or living with the fear and saying nothing. Do what I did not:

  1. Go to the Alzheimer’s Society Website and read up on the symptoms. https://www.alzheimers.org.uk

  2. Make a clear list of the changes you have seen, including the time of day and any pattern you see.

  3. Sit your parent down and say you have noticed changes and that it is best to get things checked out.

  4. Reassure them that, if there is a memory problem, there are now medications which can dramatically slow down their decline.

  5. Tell them they are safe and that you will always be there.

  6. Tell your parent they are loved.

  7. Go to the GP with your list of symptoms. Some GPs will see you alone ahead of taking your parent. Be honest and tell him or her everything.

You need to be ready for all types of reaction when you broach the subject. Some parents will dismiss it, others will be frightened, some will cry and some get angry. Your only response must be quiet, calm reassurance and a promise to be by their side. The fear of ‘losing your mind’ is a terror for most of us and this is a time when you have to be the parent, you have to hold their hand and you have to be the strong one.

Don’t wait. Act. You might be lucky and have a diagnosis of something other than dementia. But if it is the dreaded D, at least you are taking control.

Be strong Sassista.

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