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My beautiful Mother died of dementia on December 30th 2021 at the age of 93yrs,to watch her slowly decorate,not rembering what day it is or family members,she use to a qualified nurse caring for people who had dementia also, and to suddenly see her on the other side of the fence is so difficult and distressful ,it was like being with a total stranger, so yes it's a dreadful disease that no one should never have to endure,so I'm so frightened that I would get it ,so I will make the most of my life before it gets to me.

My mam was diagnosed 7 years ago and has lost speech incontinent and this last few weeks she has become violent to my dad who is her carer and myself. She will only now allow my sister's and females to be with her. My dad is distraught as the have been married for 54 years and she has been the pillar for the family always coming to her with their problems and she has always helped anyone.

My mum died of Dementia in 2018 after being diagnosed in 2012. There was virtually no support or advice & we had to muddle through as a family as best we could. Like so many others, dad tried to care for her until it started to take its toll on him. Physically & emotionally. Luckily, we are a close family & between my sister , dad & I, we somehow got through it. It’s a truly horrible disease but the lack of any kind of support network & the potential of the sufferer or their family having to use their life savings to pay for care is a double whammy.

I look after my mom for 10 years, she died last September, she did not know me , it was very sad I was her daughter.

My Dad was diagnosed with Dementia 2 years before he died. He passed away 18 years ago. Mum and Dad met he was 8 and she was 5. As teenagers they started dating and ended up married for 60 years. I did as much as I was asked by mum. I was always a Daddy's girl and as the Dementia progressed rapidly he wouldn't allow anyone but mum or me to sit with him. This cruel condition imprisoned my mum as well as my dad. One of the worst days was when I was sat with him whilst mum had a day out. He had a 'lucid' moment. He looked at me and asked if he had dementia. I said I didn't know. He said he scared and I said so was I. We held each other and sobbed. This man was my best friend, my hero, even when he thought I was wrong in my choices he supported me, and he was sobbing into my arms. The moment passed and I never told mum. It's a strange thing to say but I am thankful that he never forgot who me or mum were. He died before we had to suffer that. It has left me wondering if I will succumb to it. I lost my dad bit by bit and watched my mum having to deal with it day in and day out. I don't want my daughter to have to go through that. More research into how to halt dementia needs to be done. I feel that more info could be given to the families in how to handle the situations that crop up. A leaflet is not enough.

My Dad was diagnosed as having dementia back in late 1990s. At first he continue to live at home with Mum. She had some support from outside of the family.. A sitter came in for a few hours every week so she could go out. I had support as I had several sessions with a counsellor who specialised in working with family of people with dementia. She gave me practical things to do like putting together a family album. One weekend Mum became ill and was taken to hospital. I moved into their flat to care for Dad. Mum decided she could not managed Dad at home. I had to sort an emergency admission into a care home. Someone from social services came, did the assessment, found a room and took him there. Next day my sister and I visited him. We thought the place was awful. After a few days another sister managed to get him into the care home she worked at. Unfortunately his behaviour deteriorated so he was too disruptive and they wanted him out. Mum wanted him to go into a home run by Bristol City Council but there was awaiting list which he was added to. We visited homes and eventually found one that appeared to be suitable and had a vacancy. Someone from the home visited Dad and did an assessment and accepted him. But just before the move a vacancy came up at home Mum wanted him to live in. He was not there for long when he became very aggressive and would not allow people to go in and out. A doctor was called and he was sectioned and admitted to Southmead hospital. He managed somehow to escape and the police were out looking for him. He was found by someone from the ward trying to get home. He was then moved into an EMI. We had visited it but not liked it. However it was wonderful. It had 4 wings. One was the office, kitchen, store, etc. The other three were home to 10 residents in each one. They were all decorated differently. They seemed more like someones home rather than a Home. There was a large garden which residents and visitors could access. They had an activities co-ordinator who ran a weekly lunch club and took residents out to play skittles, have a drink, etc. I worked with other people who had a family member there to form 'The friends of Humphry Repton'. We held events like fetes, music events etc. We raised funds and put in a sensory garden and a wall of memories - 8 big pictures of memorable events in Bristol e.g. Concord flying over suspension bridge. People could have a tile painted in memory of their loved one and hung on a wall We had a mural of Weston Super Mare painted on a wall and even had a machine that puffed out the smell of the beach and sea. My Dad dementia got worse. The staff always showed affection and care to my Dad. There was not a lot of staff turn over. The manager called me one Sunday to tell me she thought Dad was coming to the end of his live. All the family spent time with him. I was allowed to stay overnight with him. The care the staff gave him and me was exceptional. I was allowed to use the staff shower and provided with food. He died after 3 days with my Mum, Yvonne (sister) and me holding his hands. Before I resigned from the Friends my family presented the home with a fold up bed in a beautiful hand made cabinet. I had to sit/rest/sleep in a chair in my Dads room. We wanted anyone who wanted to stay with their family member overnight would have a bed in the room. We had a tile made in memory of Dad. In the 4 corners we had a pint of beer, a football, a horse and a cigarette - all things he enjoyed. Sadly the EMI has been closed.