Last Thursday I participated in a Backbench Business Committee debate in the Commons on dementia; sharing the experiencess I have had of helping care for my mother who had Alzheimer’s.
The debate was incredibly moving and highlighted the real challenges people with dementia face as well as drawing on personal experiences by MPs from all sides of the House. The full debate can be found here and I have copied my speech in full below:-
“Debbie Abrahams (Oldham East and Saddleworth) (Lab): I congratulate right hon. and hon. Members on securing this important debate. The speeches have been moving and thoughtful. Today has demonstrated the best of Parliament, with MPs coming together and contributing to how we can resolve the dreadful issues around dementia. I am grateful to have the opportunity to speak today as, in addition to representing a constituency in Oldham where, in 2010, 2,318 people were diagnosed with Alzheimer’s, the most common form of dementia, I have personal experience of being the daughter and carer of someone with Alzheimer’s. I would like to bring that personal experience to the debate.
“In September last year, my mother died of Alzheimer’s. She was only 74. In 1992, she remarried and moved to the US, and it was there, 10 years later, that she was diagnosed with the disease.”
“The Parliamentary Under-Secretary of State for Health (Anna Soubry): Does the hon. Lady agree that those who have experienced these sorts of incidences first hand can bring to debates a remarkable amount of insight to, and understanding of, these conditions? Does she also agree that it is important for us all, especially Government, to listen to those experiences, so that we might be able to learn from them?”
“Debbie Abrahams: I am very grateful to the hon. Lady for her intervention. I totally agree.
“My mother was 64 when she was diagnosed and was still working. She told me that she stood in the middle of the office where she worked and could not remember why she was there. Not only did she find it abhorrent to be diagnosed with this devastating degenerative disease, but the financial consequences of having to give up her job were a severe blow too.
“To watch her decline was nothing short of heartbreaking. Two years after she was diagnosed, the penny dropped for me when we went to a restaurant and she was given a menu. As my hon. Friend the Member for Bridgend (Mrs Moon) said, it is so important to make sure that people with dementia still have as much control over their lives as possible. She looked at the menu, and kept on looking at it again and again. She did not understand what she had to do with the menu—one of the practical consequences of the disease. She became a different person—not a better or a worse person, just different. As much as I loved my old Mum, I loved my new Mum too. I will remember until the day I die the first time she did not recognise me, which was about four years after she was diagnosed. She was very distressed, because she knew that I was someone of importance to her, but she did not know her relationship to me. Needless to say, the pain I felt was—well, I cannot explain.
“My mother went from being a brilliant, vivacious, caring woman—a woman who invented the term social justice before it entered the lexicon—to a woman who gradually lost her ability to communicate, feed or toilet herself. In the last year of her life, she became wheelchair-bound and in her final month completely bedridden. She was unable even to lift her head and the end came shortly after she lost her ability to swallow.
“In many ways we were very lucky because my mother remained physically well for so long, but also because up until the last year of her life she seemed relatively content, smiling and laughing, particularly around animals and children, as she had always been. I agree with my hon. Friend the Member for Bridgend that people with dementia understand far more and we have to find ways of communicating with them. My hon. Friend the Member for Liverpool, Walton (Steve Rotheram) also talked about different ways of engaging with people with dementia.
“Unfortunately, the care arrangements in the final year of Mum’s life, and ultimately the circumstances around her death, can only be described as shameful. She was in the US at this stage. After much consideration, I have decided to talk about this now because dementia has such consequences for everybody in this country and across the world. Up until 2011, my stepfather, who is 81, had been Mum’s main carer, although he paid for a carer to help Mum get up in the morning in their New York home. I used to provide respite for him during my leave, but the physical and emotional toil and strain was taking its toll and he began looking for caring support.
“That support was offered by an acquaintance of his who offered to provide care for my mum for an agreed fee. Over a few months, unbeknown to me or my family, the new carer moved into the house, got access to their finances, sold their home and drove them more than 800 miles away from my stepfather’s family in New York to South Carolina, where they knew nobody. Within a week of the move, my mum was admitted to hospital and we were told that she had days to live. When I arrived, I was shocked to see their circumstances: they had moved from a comfortable family home to what can only be described as a hovel, and the female carer had gained almost complete control over their lives. I alerted Adult Protective Services in South Carolina about my concerns for my mum’s and stepdad’s welfare on 24 August. After week’s of chasing it, including through the Governor’s office, I got a reply on 19 October saying that it deemed my father, whom it had never even met, to be competent and would not be taking it any further. Unfortunately, my mum had died by then.
“My mum’s story is not unique. The stages in her decline and her and my family’s experiences are being replicated in this country and across the world. My story happened in the US and, based on my discussions with adult protection teams in this country, I am confident that the casual response from Adult Protective Services in South Carolina would not be reflected here, but there are still lessons to learn. We must ensure that the regime we set up around carers protects people with dementia from exploitation. I fear that, as has happened in other areas of the world where personal health budgets and individual social budgets have been introduced, some of the moves towards personal budgets here will lead to fraud and exploitation.
“I could speak for hours about what I believe we need to do, but I would like to raise just a few points. First, as individuals, families and communities, we need to be more aware of the disease, as has already been mentioned. The odds are that most people will be affected by this disease. It might not be themselves or their family, but it might be their friends or neighbours, and we need to do more to protect ourselves against the disease. The Alzheimer’s Society is a wonderful resource, as we just heard, for information and support. We need to keep active and healthy, not smoke and so on—all the messages we know so well.
“We need to do more on research. I fully support and recognise what the Government are doing in increasing research funding—it is such an important area—but the moneys being dedicated are paltry next to the scale of the problem. We need to address that. I was pleased to hear what my right hon. Friend the Member for Salford and Eccles (Hazel Blears) said about the Wellcome Trust funding, and I hope that we can pursue that more.
“Finally, we need to do far more at health and care service levels. As I said, 2,318 people in Oldham were diagnosed with Alzheimer’s in 2010 and more than 800,000 across the country. By 2020, it is estimated that this number will have increased to 1 million. Most worryingly, however, as we have already heard, that is an underestimate and is probably half the actual scale of the disease. Apart from the human cost, £23 billion is spent treating and caring for Alzheimer’s patients every year. This will rise to £27 billion by 2018 and will continue to increase. There is already a care crisis in this country, with cuts to adult care services in the NHS, and this will only get worse, not better. Care services are already at breaking point. How will families cope with Alzheimer’s? It is a ticking time bomb. I urge the Government and the Opposition to work together to reach a cross-party consensus on how we fund and deliver national care service, and that must include the Treasury teams. We cannot afford to kick this issue into the long grass any longer.”