Alzheimer: stages of development of the disease

Case study

Gordon was 74 years old when his wife Liz realized something was wrong with him. According to Liz, the first thing she noticed was that Gordon began to take poor care of the garden. He was a keen gardener and often won prizes for his vegetables. However, lately he has done everything wrong several times: planting seeds at the wrong time, forgetting to water the plants, not pulling out the weeds.

At first, Liz thought that Gordon was just tired of gardening, but the situation worsened. Driving back from the supermarket, Gordon suddenly took the wrong turn and drove the wrong way down a one-way street. A few weeks later, he became confused reading the bank statement and lost his temper, which was completely out of character for him.

Liz tried to take Gordon to the doctor, but he was sure he was fine. In the end, Liz called Dr. Blunt herself, but he replied that it was probably age-related changes, and advised not to worry. But Gordon soon got worse. He began to dress sloppily, sometimes wearing the same clothes for long periods, until Liz reminded him that it was time to change clothes. He was always repeating the same thing and asking Liz a question over and over again. He abandoned the plot and sat idle for hours.

Liz insisted that Gordon go to the doctor, and now she went with him herself. The doctor listened carefully to the story of Gordon’s problems and referred him to a memory specialist. The counselor interviewed Gordon and Liz at home, ran some tests, and diagnosed Gordon with Alzheimer’s.

Alzheimer’s disease is the most common type of dementia. It was first described by Alois Alzheimer, who reported on the unusual condition of a 50-year-old woman. The psychiatrist listed the symptoms: “One of the first signs of illness in a 51-year-old woman was intense jealousy. Soon her memory began to deteriorate rapidly. She could get lost near the house, dragging objects from place to place, hiding, and sometimes she thought that they wanted to kill her, and called for help. From time to time she behaved strangely: she carried sheets and blankets back and forth, called her husband and daughter, and probably experienced auditory hallucinations. Often she would scream for hours in a terrible voice” (Alois Alzheimer, 1907).

Slow start

Alzheimer’s disease starts slowly and progresses just as slowly. Sometimes it takes a year or two from the first signs to the diagnosis. Symptoms are subtle at first—usually mild memory impairment that is difficult to distinguish from normal forgetfulness with aging; it may also be difficult to maintain attention (for example, keeping track of finances or taking in information); speech is disturbed (for example, the necessary words are not remembered).

Sometimes the deterioration is caused by sudden changes in the usual routine – for example, on vacation or during illness. Sometimes dementia is detected after the death of a life partner. The experience of loss does not in itself provoke dementia, but it can make it noticeable, because the deceased helped the patient.

Progression of dementia

The course of the disease is very different. Sometimes they live with her for more than twenty years, and sometimes for much less. Although dementia progresses at different rates in different people, it is worth explaining how the disease will proceed at an early stage, as it progresses, and at its end. This is just a rough guideline. No one will experience all of the symptoms listed in our brief, but it will help people with dementia and their caregivers understand what they may be facing and prepare ahead of time. If you know that you have become a victim of this disease, it is important to come to terms with the idea that death will occur in a dementia state and make the necessary arrangements in advance. It makes sense to agree on which treatment is preferable and which one would like to refuse at the last stage.

Early stage

Case Study – Bev

Bev and Richard recalled that over the years they noticed some changes. Bev stopped loving gardening, stopped doing crossword puzzles. Sometimes it seemed as if she was in a fog. The first sign was that Bev was having a hard time talking on the phone. It was all right when she called herself, but if they called her, it confused her.

At an early stage, a person may:

• become forgetful (it is especially difficult to remember what just happened);
• lose track of time, resulting in missing appointments and not paying bills;
• lose interest and lose the ability to concentrate;
• lose motivation;
• become more withdrawn;
• experience speech difficulties (it is difficult to remember the right words);
• act strangely;
• difficulty making decisions
• less contact with family or colleagues;
• change behavior;
• often experience mood swings, feel depressed or easily irritated.

middle stage

At this stage, it is clear that the person has dementia, that it affects their daily activities and ability to live independently. This can provoke a significant change in behavior, usually due to a sense of hopelessness and misunderstanding of what is happening both on the part of the patient and his relatives.

At this stage, a person with dementia may:

• becoming more forgetful – forgetting the names of family members and close friends, as well as recent events, which often leads to asking the same questions;
• leave the house and get lost;
• confuse day and night and sleep poorly;
• having difficulty understanding what is being said to him;
• lose the ability to speak;
• not coping with chores around the house, such as cleaning and cooking;
• need help to get dressed and washed, as well as a reminder to visit the toilet;
• lose things and accuse others of stealing;
• become aggressive;
• experience hallucinations.

Late stage

At this stage, people with dementia have very serious memory problems, so they need full physical care. They can:

• experience significant communication difficulties;
• poorly recognize or not recognize relatives and friends at all;
• not understand what they are told and what is happening around;
• need to be fed
• do not retain urine and feces;
• difficulty walking and swallowing;
• do not get up from a chair or bed.

This stage can last for months or years, depending on the person’s physical health and the quality of their care. The patient may die from an infection, stroke, or heart attack.

final stage

Case Study – Peter

Peter has had Alzheimer’s for 12 years. He lived in a nursing home for the past year and couldn’t take care of himself. He could not get out of bed, and he needed help with everything, including eating and washing. For six months he was treated like a bedridden patient, and during this time he did not say a word. Peter seemed oblivious to the outside world, didn’t communicate with anyone, and showed no interest in his surroundings.

He eventually came down with pneumonia and the nurses decided he was going to die. They tested the end-of-life plan that Peter and his wife and doctor wrote years ago when he learned of his diagnosis. It said that Peter didn’t want to die in the hospital. Then the nurses set up all the necessary amenities for him in the nursing home and called his wife to inform her of what was happening.

Helen’s wife arrived the same evening. Peter was dying. He opened his eyes, reached out his hand, touched her hand and said, “Hello, dear. I love you”. Six hours later, Peter passed away peacefully.

At this stage, the person will not be able to speak or move normally; he will need constant help, including to eat and drink. In the final stage, it usually becomes difficult to swallow. It is important to understand that even then (as Peter’s story shows) people are often aware of what is going on around them, who is around them and what they are talking about. Almost certainly at any stage they may experience pain (for example, toothache or constipation) and discomfort if they are hungry or thirsty.

If there is a suspicion that a person is developing dementia, it is necessary to see a doctor as soon as possible. With a correct diagnosis, the patient and his family recognize new symptoms in a timely manner, and in this way, some treatable disease can be ruled out – for example, depression, which can look like dementia.

Knowing the diagnosis also allows people with dementia and their caregivers to better plan for the future and prepare for what lies ahead, such as establishing durable power of attorney and developing a care plan. In addition, it simplifies getting advice and solving other organizational issues.

Read more about this in the book Let’s Talk About Alzheimer’s by James Warner and Nori Graham. A pocket guide for caregivers of loved ones with dementia (Olymp-Business, 2020)