Meeting of the Parliament 09 October 2019
I, too, congratulate Sandra White on bringing to the chamber this debate on such an important subject. I welcome former colleagues and campaigners to the public gallery.
The incidence of dementia will increase, because people are living longer and therefore more people are susceptible to developing the condition. That said, proportionally, the number of old people who are developing dementia is falling. Living longer is a good thing—we use life expectancy levels to demonstrate the economic and social wellbeing of our society and to measure our country’s progress against that of others. However, dementia care is treated differently from care for those with other health conditions. Care is seldom provided by the NHS, which means that patients often pay for their care in the care sector.
No one is suggesting that care should be delivered in hospital, but there is a disparity between conditions with regard to which aspects of their care a person must pay for. Most people who have dementia want to live and die at home, but that cannot happen without high-quality home care services being available to them. I have constituents who have been moved huge distances from home to enable them to access diagnosis and specialist services. That takes them away from what is familiar, which is really bad for someone with dementia. It also increases the strain on the family, forcing them to leave home for days just to be able to visit, not to mention the associated costs.
When it comes to treatment in our health service, there seems to be a hierarchy of conditions. If someone can be cured, no expense is spared; if they cannot, their experience is altogether different. While the NHS has had its funding protected to a greater extent, local authorities, on which dementia care falls, have faced severe cuts that impact on services.
I have spoken to care workers who specialise in dementia. They believe that, with the right interventions from care workers and the use modern technology, they can keep people at home, and safe, for much longer. With one client, they used a recording of her daughter’s voice telling her mother not to go out when the front door was open at night. Where family are present, they need support too. Unpaid family carers have told me that they are unable to get a night’s sleep because their loved one does not settle. They cannot leave them alone, so they have no time to themselves. In turn, they can become ill, which means that two people, rather than just one person, will need intervention. The right support can keep people at home longer, and that will provide them with a better quality of life.
Those who provide paid care for people with advanced disease need to know the person’s history. That was once described to me as a shoogly bookcase. The bottom bookshelf has the person’s values and early memories and, as they live, they begin to fill the higher bookshelves with their memories and experience. If they develop dementia, it is as if someone is starting to shake the shoogly bookcase. The first books to fall are the ones at the top—the most recently added new and short-term memories. As time goes on, more memories will be lost, the bookcase will shake more, and the contents of the lower shelves will be lost. At that point, a person will regress back to their early values and memories. The knowledge of a person’s history helps carers to identify their needs and values at that stage of the condition.
That was explained to me in a story about a woman who was in care and became very distressed and aggressive when she took part in activities in communal areas of the home. She was happy and placid in her own room, but she got very upset when she mixed socially. It transpired that she was of a generation in which a woman who went out properly dressed would always wear a hat. The home got her a hat, and she then thoroughly enjoyed social activities because she felt that she was properly dressed for the occasion. With regard to her knowledge and values, that was where she was.
That sounds simple, and in some ways it is, but that cannot be done unless people know the person who is being cared for and the care is patient centred. We need to find ways of providing such care so that someone’s welfare does not depend on their condition or—worse still—their wealth. A caring society must be able to provide care from the cradle to the grave, regardless of the condition.
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