When Sue Nelson learned that her father had been diagnosed with dementia, her own life seemed to be going downhill. But if modern medicine is virtually powerless to help the patient, the life of the patient’s family and loved ones need not become a nightmare. Research has uncovered many effective and scientifically proven ways to help loved ones through this difficult ordeal.
As part of World Alzheimer’s Awareness Week, the BBC tells the moving story of a family who have learned to live with the disease. The destructive impact of dementia (commonly referred to as senile dementia, although this is not entirely accurate) on a person’s personality is immense, as this disease gradually undermines memory, destroying memories – and sometimes replacing them with new, false ones. As a result, the patient loses the ability to concentrate on anything. Their consciousness becomes confused and their mood fluctuates. The faces of familiar people are erased from their memory – even the closest and dearest. The most basic daily tasks become increasingly difficult and incomprehensible, eventually turning into unfathomable puzzles that can leave them bewildered.
However, the number of offerings should remain the same: Not much less suffer their loved ones who are forced to watch the slow withering away of their minds. The authors of a scientific study of this disorder even urge that the patient’s surrounding family members (and those who care for them) be considered “unobvious secondary patients”. Their own “symptoms” can take many forms. This process can lead to significant social isolation, increased health risks and financial difficulties. If your father or mother has dementia, the disease forces you to completely reevaluate your relationship with your parents – as if turning them upside down. We explain quickly, simply and clearly what has happened, why it is important and what will happen next. Episodes End of story Podcast advertising
In my life, this happened during Christmas 2019. In the corner of the room stood an artificial Christmas tree, suffering from an overdose of tinsel. A family gathered nearby: my husband wore a bright Christmas sweater, and our son, a college student, sat with a bored look on his face, arranging solitaire cards. His grandfather, my father, was poking a traditional Christmas turkey with a fork. All in all, it was business as usual, except that it was happening in a hospital ward in Stevenage, a small town north of London. The day before, my 87-year-old father was taken by ambulance when he began vomiting what looked like ground black coffee. Although my father joked with the nurses that it was my cooking, something else was happening. According to the results of the analysis, it was an overdose of painkillers – which, to be honest, confused us all a bit. But even more unexpected was the doctor’s question: “Has your father had dementia for a long time?” “As far as I know,” I said, “he does not have dementia.”
The most common symptom of dementia is memory loss, caused by aging brain cells that gradually stop functioning. Approximately 57 million people worldwide suffer from dementia. This number is expected to triple to approximately 153 million by mid-century due to the general aging and population growth of the planet. Women are much more likely to develop dementia than men, and it is not generally considered a disease. “Dementia is a general term for a number of progressive neurodegenerative (i.e., brain) diseases,” explains Caroline Skeates, deputy chief executive of the charity Dementia UK. These changes in the brain can be caused by various diseases. According to Caroline, doctors currently distinguish more than 200 types of dementia. “The most common are Alzheimer’s disease, vascular dementia, dementia with Lewy bodies (DLB), frontal-temporal and mixed. And they can all manifest in different ways,” he says.
Amyloid plaques (white) covering neuronal projections in the brain of a person with Alzheimer’s disease. Dementia with Lewy bodies, for example, is caused by the accumulation of proteins of the same name in brain cells, leading to the development of hallucinations, drowsiness and fainting in patients. However, the first symptom of dementia, usually noticed by close family members of an elderly person, is memory loss. Memory begins to deteriorate significantly when brain cells stop functioning properly, inevitably affecting the patient’s thoughts, ability to communicate and remember information. “Once this process has started, doctors usually cannot help such a person – there are no drugs,” says Rosa Sancho, head of research at the charity Alzheimer’s Research UK, shaking her hands. “Some drugs can be prescribed, of course, but they can only temporarily alleviate the symptoms,” she explains.
Scientific research into dementia gives hope to millions of people around the world. Since the causes of the occurring changes in the brain are currently not treatable, the only possible solution is symptomatic treatment, creating conditions for the patient that support and stimulate the declining brain function, and most importantly – prevention of degenerative processes. “Dementia is not just a diagnosis for the patient, but for the entire family,” Skates said. “Every time another case of the disease is identified, irreversible changes occur in the lives of a whole range of people.”
The United States recently approved a drug that may help improve the condition of patients suffering from dementia. For those who care for these patients, memory loss can turn everyday life into an endless series of inexplicable mysteries. In the case of my father, as I mentioned earlier, it was completely unclear why he suddenly drank so much painkiller. It was only later that I remembered that he had limped slightly a few days before I picked him up at the London train station. It turned out that he had slipped on the street a few weeks earlier and broken his leg. “What, they didn’t put you in a cast?” – I was surprised at the time. “Yes, they gave me a fine, but it really rattled my nerves,” Dad replied. “But everything is fine, I’m totally fine!”
Many people with dementia remain undiagnosed: people are afraid to go to the doctor because of the stereotypes associated with the disease. The doctor at the hospital assumed that the father was taking something for pain, but had accidentally taken too much, forgetting that he had taken the same pills earlier. The father’s suitcase confirmed this theory: more than a dozen packages of painkillers were found inside, most of them empty. Some manifestations of dementia can easily be attributed to age. My father was always a rather absent-minded and forgetful person – and I inherited these qualities from him, so I didn’t pay much attention to them, convincing myself that losing a phone all the time was perfectly normal for a person over 80. In other areas, considering his age, he was doing well. He read the Times daily and followed the news on television closely. He loved to discuss politics, used public transportation frequently, walked 10 km every day, and never missed a home game of his favorite soccer team, Everton (though I am far from certain that these games had a positive effect on his mental state). Of course, we all had to listen to the same stories over and over again. And once he ran to the nearest store, but got lost on the way and did not return for three hours. However, he came back unharmed, so no one attached much importance to this incident – they laughed about it and forgot about it. For many adults dealing with a forgetful parent or partner, such an approach may seem respectful, sensitive, and perhaps the only one possible. On a global scale, however, it is becoming a serious problem, as many people with dementia remain undiagnosed precisely because the symptoms of the disease are ignored by their loved ones.
Several different blood tests have been developed to detect signs of impending dementia as early as possible. “A review of scientific research from 2017 shows that 62% of dementia cases worldwide go undiagnosed,” claims Elizabeth Ford, a lecturer in first aid at Brighton and Sussex Medical School. “This means that only one in three cases is actually diagnosed.”
Scientists have found that beta-amyloid (orange plaques) worsens the condition of people with Alzheimer’s disease. Ford cites two main reasons why older people are reluctant to seek medical help for memory loss: the lack of effective treatments that could fundamentally change the course of the disease, and a host of traditional stereotypes. “Half of adult Britons admit that this is the disease they fear most,” she notes. “So therapists themselves are not usually in a hurry to send their patients to specialists who can confirm this depressing and highly stigmatized diagnosis.”
Scientists continue to wrestle with the question of how much age-related brain decline is determined by genetic factors. Doctors are very careful in trying to understand how prepared a particular patient is for a whole series of tests that he or she will need to undergo for a diagnosis, as well as how prepared they are to hear it in principle. Not everyone will want to know the answer to the question of whether they are really beginning to experience dementia. The worst situation for diagnosis is, of course, in poor countries. But even in places where equal access to free healthcare is much better and diagnosing dementia is not a problem, people may simply ignore worsening symptoms of the disease because they see no point in confirming their diagnosis. Often, spouses, friends, or relatives of older people with dementia create a “normalization bubble” around themselves: they continue to justify their loved one’s increasingly inexplicable behavior with various reasons, unconsciously fearing that a confrontation with reality could be very painful for the patient – since it essentially means acknowledging the loss of independence. However, all the data suggest that early diagnosis can ultimately not only bring hope and expand options for the elderly patients themselves and their families, but also improve their overall quality of life. It allows for early treatment planning and the identification of resources to provide emotional and psychological support in crisis situations. National dementia strategies in several countries emphasize the benefits of early diagnosis. For my family, the first alarm bell should have sounded when my father imagined that one of our relatives had withdrawn all the money from his bank account. No matter how many times I showed him bank statements to reassure him – or even accompanied him to the bank in person – after a while the same thing would happen again. Sometimes he would play his record on the way home from the bank: “You know, Sue, I’m sorry to ask you this, but it looks like somebody’s stealing my money…”
The main efforts in the fight against Alzheimer’s disease are focused on reducing symptoms. Then there was an iron that Dad forgot to turn off – which we still remember by the cartoon silhouette left on the ironing board. Then – a partially lit gas burner. We were lucky that Dad never smoked. In all of these cases, however, I continued to turn a blind eye, telling myself that I would have done the same thing at his age. The rose-colored glasses of love for my father did not allow me to see what now seems obvious. Then came the summer of 2019, when one fine day his grandson put him on the morning train in Chester, not far from his home, to come to me in London. Unfortunately, the transportation system that day was extremely poor: hundreds of people crowded the stations trying to figure out how to get to their destinations, and the departure boards displayed messages about train delays or cancellations. I waited for him at the station in London. But after 12 hours he still hadn’t arrived. I reported his disappearance to the police. Finally, at three o’clock in the morning, the police found him in his own house, where he had returned. When I talked to him on the phone, my dad cheerfully thanked me for the wonderful weekend – even though he never actually made it to our house. There was a tectonic shift in our relationship that day, but I still remained blind. As a parent, my father has always given me unconditional love and endless support, so I initially returned to my usual role as the eldest daughter. I thought that my childhood, spent in the company of five younger siblings, gave me a useful set of skills to support my father, who had become dependent on others. I took care of organizing his affairs, monitoring and controlling their implementation, and sending regular reminders of what needed to be done. “Now it’s clear why people say you like to bully,” he chuckled. Although some studies suggest that firstborns tend to be more inclined to take on leadership roles in some processes, most scientific research in this area recognizes that a child’s birth order has little influence on his or her life choices or behavior in stressful situations. So maybe it’s still me. I just enjoy being in charge. In fact, a growing body of scientific research shows that the family situation can have a significant impact on the care of people with dementia.
Experts believe that understanding the complex mechanisms of experiencing and interacting with different emotions, such as guilt, denial, grief, competition, or fear, is extremely useful for both patients and their loved ones.
Scientists are trying to diagnose Alzheimer’s by analyzing blood. “Sometimes it is very difficult to see how the behavior of a person you have known for a long time changes,” says Skate. “But if you try to find out what is behind that behavior, it becomes easier to understand what that person might need and what idea they are trying to convey to you.”
After an accidental overdose, I agreed to see my father’s doctor. With my father’s permission, she informed me that he had been diagnosed with Alzheimer’s disease in 2017. He had kept this diagnosis a secret from all of us. I didn’t discuss it with him, and I didn’t ask any questions about it. Surveys show that people with dementia find it very difficult to talk about their diagnosis, not least because they are often unable to fully come to terms with it themselves.
The extent of the disaster he had tried so hard to hide became clear when I arrived at his home. My father’s apartment was littered with unpaid bills and threatening letters from utility workers printed in red. But the biggest shock for me personally was his refrigerator, filled to the brim with rotten food my father had bought but forgotten to cook…
Fortunately, my father had already given me a power of attorney from his attorney to act on his behalf. From then on, I was legally responsible for making all decisions in my father’s best interest. In fact, it meant that I had to rebuild our relationship from the other side on my own. In fact, legally, I became his guardian and he became my dependent. In other words, I became my own father’s mother. There was only one catch. Dad kept repeating: “Sue, you have to promise me that you will never, under any circumstances, put me in a nursing home.” As I write these words, I cannot hold back the tears. It hurts me physically that I couldn’t keep my promise.
First, my dad ended up in a shelter for a short stay, where specialists had to assess what kind of care he needed. But it was March 2020, and two days later the UK announced its first lockdown. Instead of two weeks, my dad stayed for six months. Cleaning his apartment was a depressing task. It felt like sorting through someone’s belongings after their death, but my dad was still alive. He just stopped being the person I once knew. Not a dad, but like… Schrodinger’s dad.
The guilt towards my father became almost unbearable when the first wave of the coronavirus hit the nursing homes, as it did everywhere else in the world. “Dad, of course, was infected. The truth (which is surprising) is that it literally took him a few days to overcome the virus. But I was very concerned about his mental state. He is generally a sociable person – and suddenly he has lost the opportunity to personally communicate with his family and friends due to self-isolation. In the building where, on the one hand, the inhabitants are being killed one by one by the coronavirus and, on the other hand, the strictest restrictions on freedom of movement are being introduced precisely for this reason. As soon as the first rendezvous was allowed, I immediately went to him – over 300 kilometers – to have the opportunity to watch my father through a glass window for half an hour. We weren’t even allowed to hold hands.
Over the next year, I constantly doubted whether I had done the right thing with my father – not least because I was diagnosed with autism around the same time. Sometimes, when I came to see him, he was almost himself. There were times when he could barely speak: we’d hold hands and the music of Puccini, one of his favorite composers, would play in the room. But there were glimmers of hope – maybe not for us, but for families who will suffer from dementia in the future. I learned that in 2009, a village for people with dementia was established in the Netherlands. It was created by two nurses who hoped that their elderly parents would not have to live in a regular nursing home with this diagnosis.
The village of Hogeway in the Netherlands is designed for people with dementia. Hogeweyk resembles a real village, although it is surrounded by a fence and it is not easy to cross its borders. The 150 patients who live here have access to a supermarket and a restaurant. Last year, the private company Richmond Villages used the Dutch experience to create the first such village in the UK – albeit on a much smaller scale, with six individual apartments and staff on hand to help if needed. “We strive to have them cook and do their own laundry – just like at home,” says executive director Philip Fieldhouse. According to her, this patient independence yields amazing results: “They feel much more comfortable and communicate much more often. Some relatives have noticed that their loved ones are baking again and working in the garden. Practice has shown that we can provide better care in this way, because patients are happy with their lives and adapt well.
Another village for Alzheimer’s patients was created in France. According to a recent observational study conducted by Chinese scientists, the more time people spend working from home, exercising, and visiting friends and relatives, the lower their risk of developing dementia. Another important factor in preventing the disease is a healthy lifestyle, especially in old age. If you know someone with dementia, it will no doubt make you rethink your lifestyle and plans for the future as you age. Although the causes of hearing loss are many and complex, and there is no guarantee of complete protection, some steps can reduce the risk. These include maintaining an active social life, treating hearing problems, quitting smoking or excessive alcohol consumption, and staying physically and mentally active.
Music is often used as a form of therapy for people with dementia because it can bring memories back to life. All of these tips are difficult to accept when your own father, a healthy, active and sociable person, is suffering from dementia. Now I regret not being more firm with my father because he always refused to see a doctor about his hearing problems. My only consolation is that a healthy lifestyle helped him maintain his mental health longer, even if it did not protect him from disease. So far, my father continues to recognize me, although his words are now coming out slowly, like soap bubbles rising and suddenly disappearing into the air, as he tries his best to maintain the flow of his thoughts. But I know that one day he will not recognize my face. The caring staff who care for him have already become his surrogate family. During a recent visit, I saw him politely listening, along with other patients, to a choir sing-along organized by the administration. Probably to bring back old memories, they sang the British song “We’ll Meet Again,” which was very popular during World War II but has since become very clichéd. When my father saw me, he immediately got up and walked toward me. On the way to his room, I suggested he put on one of his CDs of opera or classical music. “Anything you want,” he replied with a grin, “just not ‘We’ll Meet Again.'” For a magical moment, the father I once knew returned, and I briefly became his daughter again.