Chloe discovered she had the gene for Huntington’s Disease in 1997 and by 2001 she had started to develop symptoms such as dropping things and not wanting to go anywhere. She was 48 years old at the time.
In 2007 her husband, David, gave up work to take care of Chloe. By then she was unable to make a cup of tea without the risk of scalding herself.
YoungDementia UK (YDUK) provided support to enable Chloe to go out once a week, including horse riding and trips to garden centres. This gave Chloe a boost, but David found it increasingly difficult to cope on his own. Within three years he had reached crisis point and YDUK impressed upon Social Services the need to arrange some support, which came in the form of personal care for Chloe and some domestic help. David also tried putting Chloe into a respite care for two weeks to give himself a much needed rest, but he was unhappy with the state he found Chloe in when he went to collect her. “Her hair had been brushed the wrong way, which made her look like an old lady and her eyes were red from crying”, he said.
Dependent on live-in carer
Now Chloe doesn’t like to be away from home at all and refuses to sleep with the light switched off. They now have two live-in carers, but as Chloe has abnormal sleeping patterns, often waking David in the early hours, he has to go to bed again in the morning when the carers take over at 8 am. He feels tired most of the time. They attempted a holiday in 2013 with the help of one of the personal carers but Chloe became very agitated away from home and nobody was able to sleep. A key worker from YDUK still comes in on a Tuesday afternoon which means that David can meet up with friends and neighbours. Chloe has also started going to physio once a week and really looks forward to “going to the gym”. David said: “There definitely needs to be more support and care options for people with young dementia, including financial support for those who need it.
“Many of the homes we looked at were definitely inappropriate; there simply weren’t enough staff to provide the level of support I’d expect and people were sitting around on their own for long periods just staring out of the window.”
** Chloe’s story is true, but her name (and her husband’s name) and image have been changed to protect their identity.