Dementia - the silent killer

Dementia is a disease that affects the brain, making it harder to remember things or think as clearly as before. It's an umbrella term for over 100 different types of illnesses and disease symptoms. Symptoms of dementia may include memory loss and difficulties with day-to-day tasks, language, and problem-solving. Although the disease is perceived by many as a natural aging process it is not and should be taken very seriously. It is not exactly known what causes the disease and research is ongoing to find the causes and developments for treatment. Dementia is a progressive and terminal illness with approximately 90,000 people living with the disease in Scotland. Around two thirds are living at home, with the remainder in acute or residential care. The latter accounts for 66% of the care home population in Scotland. The annual diagnosed dementia patients in Scotland are approximately 20,000 with the same amount dying with the condition each year. People often get confused about the difference between Alzheimer's disease and dementia. Alzheimer’s disease is a type of dementia and, together with vascular dementia, makes up most cases.

The illness is most common in older generations but can affect those in their 50s, 40s or younger. It is because of this demographic that those who suffer from dementia are often cared for by loved ones such as their children or grandchildren. Tate Russell, an 18-year-old from paisley, has cared for his grandparent Elizabeth Russell since the start of the pandemic in 2020. He said:” When we first heard that my gran had dementia it was a big shock, she is 70 years old and still does almost everything herself so the whole family were surprised, but we needed to stick together and be there for my gran.” A diagnosis can be an extremely tough thing for the patient and those around them that is why it is important for those affected to be able to express their feelings and feel supported at this time. However, some people have a positive reaction to a diagnosis of dementia. They may be glad to be able to plan for the tough times ahead or relieved that they know what is going on, some may use the situation to re-evaluate their situation and focus on what’s important in life. Tate said:” over time we were worrying a lot with her general condition deteriorating and her forgetting things more often, but it didn’t get to the stage that I have seen online with some people not even knowing their families’ names and that was a relief because I was fearing that.”

Although the diagnosis of dementia is an extremely stressful and often depressing situation, there are many charities and NHS branches that can help. Alzheimer Scotland is Scotland’s national dementia charity who aim to make sure nobody faces dementia alone. They provide support and information to people with dementia, their carers and their families and fund vital dementia research. They also have a 24-hour dementia helpline that is used by families, cares and those with the illness. Andy a worker on the helpline said: “we actually receive more calls by people that actually have dementia than their families, they are often in the early stages of the illness and just want some clarity about their situation.” Alzheimer Scotland also provides services and support across Scotland to help anyone who is worried about their memory, has a diagnosis of dementia, or who is supporting someone with dementia. For a family that has been given a diagnosis Tate said: “Just try to look at it as a temporary situation, like it will get better because it is really sad seeing someone you love in a situation like that and if you’ve not got a positive mindset, it can be really difficult.”

The impact that seeing a loved one with dementia can be massive for family and friends, Tate said:” It was hard to see my gran that way, but I tried to look at the bigger picture. Like she needed our help and that was all we could do, but it was really mentally difficult” It can be hard for the families to adjust to life with someone with dementia and that is why there is such a large number of care home patients with the disease. These relatives usually have children themselves and cannot be there to support their parents due to this work and other commitments. Andy, the volunteer on the helpline said: “Most families really struggle deciding if they should put their loved ones in a care home or not, but it really is the best place for them. They get specialist care and are surrounded by others just like them, going through the same thing as them.”

The Covid-19 pandemic was a tough time on everyone but especially on Scotland’s care home residents. With many residents of care homes being in a shielding category due to their age and health conditions they were unable to see loved ones for an exceedingly long time. Also due to many residents having dementia that made them even more at risk, dementia was the main pre-existing condition in deaths involving Covid-19. During 2020, 28% of all coronavirus deaths also mentioned dementia on the death certificate, during April 2020 deaths caused by dementia were 67% higher than the five-year average and throughout the whole year, deaths caused by dementia were 5% above the five-year average. Tate said: “We did think about putting my gran in a care home if things got worse, but thankfully she has stayed at a steady level of the illness, I think it was good that during the lockdowns she stayed with us because she would have been really lonely on her own.”

There is currently no cure for dementia. However, there are drugs and non-drug treatments that can lessen a person’s symptoms. There are some drugs that can be used to slow the progression of the disease, but these are only for some areas and not all. Many care centres use therapy as a coping mechanism for those with the disease and carers are encouraged to keep the patient active and engaged in conversation this can help to reduce feelings of stress, frustration and boredom. If the person does not have enough interaction with other people, this can sometimes contribute to changes in behaviour. Having regular one-to- one time can help significantly. Andy said: “This is why the work of the charity is so important because those who live with a loved one may noy receive as much attention as they need and the impact this can have on the disease is massive.”