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LucyGransnet (GNHQ) Wed 21-May-14 17:28:03

Fiona Phillips: the double impact of dementia

One of the first people in the public eye to speak out about dementia, Fiona's parents both suffered from the illness and twice over, Fiona became an impromptu carer. Juggling her presenting job at GMTV with caring for her children and her mother, then later her father, Fiona knows all too well how hard the disease can hit.

Fiona Phillips

The double impact of dementia

Posted on: Wed 21-May-14 17:28:03


Lead photo

Alzheimer's Society's helpline provided a lifeline for Fiona, who cared for both her mother and her father as dementia set in.

Both of my parents died with dementia, so I’m all too aware of the issues that face families affected by this cruel disease. Staggeringly, as many as one in three of us over the age of 65 will develop dementia yet no statistic can ever really illustrate the pain we all experience when it strikes. Both the person with dementia and loved ones around them are aware of the stigma attached to the condition and the temptation to bury your head in the sand and hope the problem goes away.

My mum was only in her late 50s when she started behaving oddly. She was unable to count money, repeated things, cried a lot, missed appointments and got lost occasionally. I hadn’t realised that these behaviours were in fact symptoms of dementia and to my shame, I sometimes got irritated rather than showed sympathy. Perhaps worse, not even her GP recognised her symptoms when she raised concerns. I put this oversight down to a lack of awareness of the condition and the misconception that dementia only affects older people.

Finding out that my dad, who was in his mid 60s, also had the condition was a cruel coincidence that came to dominate my family's life.

Dementia is more in the spotlight nowadays and there are more services available but unfortunately there can still be a real reluctance to seek help. This needs to change which is why I’ve put my heart and soul behind sharing my experiences in a bid to raise awareness of the condition. Most recently I sang along to the classic A Little Help With My Friends in a TV advertisement calling for us all to become Dementia Friends. While not a natural singer, I sang from the bottom of my heart in that advert, remembering the journey my parents and I had had.

Awareness brings us all a step closer to knowing what to do when facing dementia. It’s so important to seek help when you need it, as the sooner you know what you are dealing with, the sooner you can feel in control again and get on with your life.

Finding out that my dad, who was in his mid 60s, also had the condition was a cruel coincidence that came to dominate my family’s life. I visited him one day to find that he had been sleeping on a dirty old mattress in the living room, things were piled high in the kitchen and he’d stuck notes around the house as he realised he was struggling to remember. At the horrifying sight I simply hugged him and saw relief in his eyes. I remember saying: "Don’t worry dad, I’ll get you out of here".

So much of my attention had been on my Mum that Dad acting out of sorts went a little under the radar. I was balancing life in London as a television broadcaster for GMTV with being a mother as well as being an impromptu carer. I found it difficult to cope but felt relief when I opened up to Alzheimer’s Society’s National Dementia Helpline who provided - and continue to provide - a lifeline to families like mine.

By Fiona Phillips

Twitter: @realmissfiona

Mishap Wed 21-May-14 18:53:50

My mother had Lewy Body dementia, which is a cruel combination of Alzheimers-type symptoms, Parkinsonism and psychotic elements (hallucinations etc.). It truly was a nightmare, both for her, and for her family. When she died she knew no-one around her and lived in perpetual fear as she kept seeing people who were not there; and the last time I saw her she was clinging onto the arm of her wheelchair because she thought she had to hold it up to keep it from falling on the floor. Her decline was truly grim - words cannot describe it. If she had been with-it enough I know that she would have ended her life somehow.

My plea is for proper care for people like her - I hold out little hope of a cure, and believe that most of us will finish up with some degree of dementia.

Some of the places we saw where the hospital proposed my mother should go were truly horrifying - I will not bore you with the descriptions of them. How these places ever got registered or passed their inspections is beyond belief.

There has to be some way that we stop condemning elderly people with dementia to this appalling care.

There are a few good homes, and luckily we finally found one for my mother - a somewhat scruffy place, but run like a family - she eventually died there 8 years ago with the best are that could be expected under the circumstances - but no-one could fully relieve her distress. My Dad too died in the same home last summer and I am eternally grateful to them for their loving care.

A good standard of care can make a huge difference. The recent programmes on BBC TV about who will look after our parents showed an elderly lady on a hospital ward that was dreadful - the physical design of it and the ignorance of the nurses made this poor woman's behaviour vastly worse. When she moved into a decent care facility, her behaviour improved straight away, she became calmer, and the need for 24 hour one-to-one surveillance vanished. I worked for 10 years in a dementia unit and know how it should be done.

These good homes are so few and far between and the only way forward for improvement is for the government to take the problem seriously and fund what is needed. I understand the problem of limited funds, but these old and frightened people are being treated appallingly and it cannot go on in a civilized society.

annsixty Wed 21-May-14 20:22:31

I feel that if Dh and I have to travel this journey we are lucky that ,unlike Mishap's parents, my H is 78 and the prognosis we have is that deterioration so far is slow.For people who are younger the outlook is not good, but the problem is certainly not being taken as seriously as it should be, maybe because we are considered old and not valued. Or is that cynical?

Aka Wed 21-May-14 21:10:32