Correct diagnosis of the cause of dementia is important because management, prognosis and potential inheritability of different conditions vary widely.
What is involved in memory assessment or testing?
In Australia, memory specialists can be consulted privately or through a memory clinic. A typical memory clinic has a team which may include geriatricians, psychiatrists, neurologists, nurses, neuropsychologists, speech pathologists, occupational therapists and social workers. People are usually referred to the clinic by their regular doctor. The person who is thought to have memory difficulties is seen by one of the doctors in the clinic, and the person’s family is interviewed by a team member to gather information about how and when the memory problem developed. This stage is important because when people have memory difficulties, they are often not able to give exact details concerning the nature and extent of their own problem. The memory clinic team conducts a detailed assessment and provides feedback to the person who has had their memory assessed, together with family members. Follow-up appointments can be scheduled to monitor progress and to discuss ongoing management.
As well as a physical examination, an assessment of memory and other thinking abilities is performed. This can vary from simple tests to a more detailed neuropsychological assessment. A doctor will often use brief tests of memory and thinking, which are useful because they are quick and easy to use, and interpreting them does not require extensive training. However, they do not always pick up mild or subtle memory difficulties—and, if they do, they may not provide enough information to assist with finding the cause of the memory problem. Nor do these brief tests examine a person’s abilities in enough detail to be helpful with planning for future care. Sometimes a doctor will refer onwards for more comprehensive assessment of memory and thinking abilities—by a neuropsychologist, for instance.
How is Alzheimer’s disease different from normal memory loss?
Everyday memory problems can be frustrating, but they don’t pose a threat to your ability to function independently. Normal everyday memory lapses are often the result of not paying close attention. We might notice that we can still learn something new if we are interested enough, and make an effort to do so. Memory can play more tricks on us as we get older when we are out of routine (see Chapter 2), or when we are experiencing changes in our health or lifestyle, as described in Chapters 3 and 4.
If you have Alzheimer’s disease, you may require assistance with everyday activities you used to do independently. You might forget how to do things that you have always been very good at—such as how to cook a meal that you have made regularly in the past, or how to use the washing machine that you have had for years. It could be difficult for you to remember your home address, or you might become lost in familiar surroundings.
My wife has just been diagnosed with Alzheimer’s disease. Over the past three years her memory has gradually gone from bad to worse. She always had a good memory, but now things just don’t sink in—I answer her questions and she asks me the same thing again straight away. She forgets where things are kept around the house and keeps putting them in new locations, and of course can’t find them later. She has been lost on several occasions in shopping centres.
Now her memory for the past is slipping, too. The other day someone asked her what her job was when she was younger, and she couldn’t tell them. I’ve also noticed that she puts on the same clothes day after day. She used to be so meticulous about her appearance. Thank goodness she can still enjoy her music and the grandchildren—it’s nice to see her enjoying herself.
Chris, 82
Mild cognitive impairment
After a medical assessment of memory, some people are told that they have ‘mild cognitive impairment’. This term is used when people have memory loss that is more than expected with the ageing process, but not severe enough to warrant a diagnosis of dementia. When people have mild cognitive impairment, they experience regular and often frustrating memory lapses, but they can still carry out their everyday activities independently. Doctors usually recommend medical review after one to two years because in people diagnosed with mild cognitive impairment, there is an increased risk of developing dementia due to Alzheimer’s disease. The underlying disease process of Alzheimer’s disease is thought to build up over many years before the memory loss becomes more obvious,5 and for some people, ‘mild cognitive impairment’ reflects a very early stage in this disease process. Despite this risk, around one-third of people who are diagnosed as having mild cognitive impairment do not experience significant deterioration in their memory over time.
Can I tell if someone else has dementia?
This chapter has outlined some areas where the memory change of those with Alzheimer’s disease is different from the problems of everyday memory functioning. This difference isn’t always clear. Assessing whether memory change is part of normal ageing or a sign of early dementia can be one of the more difficult diagnostic challenges for memory specialists.
This book will certainly not provide enough information to allow people to work out whether they have Alzheimer’s disease or not. Nor can a memory specialist make conclusions from single instances of memory loss. If someone says, ‘My father repeats himself in the same conversation—do you think he has dementia?’, it would not be possible to answer them with certainty. People with and without dementia repeat themselves in conversation. One would need to know more about how often it happens, under what circumstances, how long it has been happening, what other changes have accompanied it, and so on. A comprehensive physical and memory assessment might be the best course if it is of real concern for the person.
What medical treatments are available for Alzheimer’s disease?
A great deal of the current research into Alzheimer’s disease looks at potential medical treatments. Most studies focus on drugs designed to slow or halt the decline that characterises the illness. Stop-press announcements about possible new treatments for Alzheimer’s disease hit the headlines from time to time. Most new discoveries require much investigation over many years before they can be transformed into procedures, medications or preventive behaviours. Medical science is ‘evidence-based’ and relies on studies and trials to work out whether treatments are helpful. When trying to assess the significance of new ‘breakthroughs’, give more weight to announcements that have been published in scientific journals subject to review by other scientists, and to those where the results have been repeated by more than one set of investigators.
Research and new developments are taking place all the time, so any information on medical treatments can quickly become outdated. It is important that you seek up-to-date specialist knowledge for your own situation.
The best current evidence for effective treatment of Alzheimer’s disease is for drugs called cholinesterase inhibitors, which raise the level of a chemical called acetylcholine, which is essential for memory formation within the brain. Drugs of this type include donepezil (Aricept), rivastigmine (Exelon) and galantamine (Reminyl), and these medications all work in a similar way. In people with mild to moderate Alzheimer’s disease, these medications may produce mild improvement in functioning, and there may not be the same degree of decline over the next few years as there would have been without the medication. It should be emphasised that any improvement is modest in most cases, and these medications have the potential to cause side-effects such as nausea, diarrhoea, vivid dreams, leg cramps and increased sweating. Side-effects prevent around one in eight people who are started on these drugs from continuing with them. A medication called memantine (Ebixa) is sometimes prescribed for people in the later stages of Alzheimer’s disease. People with dementia are also sometimes prescribed additional medications if they experience symptoms of depression, anxiety or psychosis.
Scientists continue to investigate the possible benefits of nutritional supplements for people with Alzheimer’s disease. There have been many studies examining the potential benefit of antioxidants, such as vitamin E
and ginkgo biloba, but the potential benefit of antioxidants in Alzheimer’s disease remains to be fully defined.6
More recently, scientists have examined the therapeutic potential of specific combinations of nutrients. ‘Souvenaid’ is a nutritional supplement containing a combination of nutrients that has been developed for people who have Alzheimer’s disease. Souvenaid has been shown to enhance the membranes of brain cells and the synaptic connections between them, which is thought to help slow decline in memory and thinking abilities during dementia.7
A wide range of other drugs are under investigation for the treatment and prevention of Alzheimer’s disease. Dementia support organisations (listed in the ‘Resources’ section at the end of this book) often distribute useful information about new treatments, and can refer people to specialists in the field who can provide expert advice and information about clinical research trials that you may wish to take part in.
Medical advice should be sought before taking any medication for Alzheimer’s disease or its prevention, whether or not it is prescribed, or bought over the counter in a pharmacy or health food store, because of the possibility of harmful side-effects and negative outcomes of interactions between drugs.
With no medical cure available for Alzheimer’s disease at present, management involves ensuring maximum quality of life for the person with dementia, and the provision of considerable support to families and carers.
What helps when the diagnosis is dementia?
If the diagnosis is dementia, it can be hard to know what to do next. It may be helpful finally to know what the problem is, and to understand why memory issues have been such a problem over recent times. Nonetheless, most people feel very emotional when being told about what the problems with memory are likely to be. It is normal to feel worried, anxious, angry, lonely or sad.
Be aware that the memory and thinking difficulties that you experience are happening because of a memory illness—don’t blame yourself for these changes. Be patient and take time to work out new ways of coping. It is common to feel embarrassed about telling others or to find it difficult to share your feelings, or even to talk about your fears, but it can be helpful to talk to other people who are dealing with the challenges of memory loss. Your local dementia support organisation can put you in contact with others who have been diagnosed with dementia.
There are many things you can do to take more control over your situation, so you can remain as independent as possible and continue to enjoy life. For example, focusing on the things that you can do well is a good start to remaining positive. Looking closely at health and lifestyle issues can make a real difference. Practical strategies can help to increase confidence, reduce anxiety and get around the problems of memory loss. Making small changes can make a big difference.
People with dementia often ask, ‘What can I do to improve my memory?’ There is a lot you can do to maximise your memory function at any point in time. As explained in Chapter 3, our memory fluctuates for a variety of reasons, which is the same when you have dementia. The graph below, of memory change over time during dementia,8 shows your maximum potential memory function as line A at the top. Underneath this line is a wiggly line B, representing your actual everyday memory function, which changes from day to day, moment to moment. Your memory loss can be worse when you are physically sick, feeling down, or dealing with something unfamiliar, like moving house. It’s important to identify any health and lifestyle factors that may be exacerbating your memory difficulties, and work on ways to keep your everyday memory function as close to the line of maximum potential memory function as possible.
Health
We discussed how important good health is to memory in Chapter 3. Looking after your physical and mental health is important when you have a memory illness. Any health problems can make your memory difficulties worse, and it is important to seek medical help for these problems.
• Illness, physical discomfort or pain. Memory loss can worsen at times of significant pain, or with infections, such as urinary tract or chest infections. People sometimes notice acute confusion after general anaesthesia for surgery. Be aware that some of the fluctuations you notice in your memory could be related to other illnesses, which of course should be treated appropriately.
• Keeping healthy involves getting some sort of regular physical activity, such as walking or gardening; eating a well-balanced diet; regular rest and relaxation; and having a regular check-up with your doctor.
• Make sure you take any prescribed medication (tips to help with remembering to take medication will be described later in this chapter). Check with your doctor to see if any current medications may have a detrimental effect on memory.
• Alcohol. Dementia can make you more sensitive to the effects of alcohol, particularly if you are taking other medications.
• Vision or hearing. If you are not able to see or hear something clearly, it is harder to recall it. Have regular vision and hearing checks, and persist with wearing recommended glasses and/or hearing aids.
• Anxiety and depression.
I’m terrified of the future. What am I heading towards? I don’t want to be a burden for my daughter.
Tom, 74, has dementia and lives with his daughter and her family
Like Tom, you may be anxious about becoming more dependent on others. It is helpful to focus on the present, and to do simple things that you enjoy—like walking or gardening—to help maintain a positive outlook and reduce your level of worry.
When I saw Terry, aged 68, he had just been diagnosed with Alzheimer’s disease, after recently recovering from cancer treatment. He said, ‘I have to concentrate on what I’m doing now. I don’t worry about 5–10 years’ time. I just do day-to-day stuff and I forget about what’s going to happen in the future. I focus on the present. I enjoy spending time with my grandchildren.’
Anne
Feeling anxious about memory loss, and continually checking yourself for the next memory failure, can make memory loss worse.
If I think about my memory too much, it’s worse. I have to be careful in conversation because I might say something that they don’t understand. It worries me. I’m slipping and I know I am.
Isobel, 81, a retired secretary with dementia, does voluntary work at an opportunity shop
When you feel anxious, you might find it difficult to focus on incoming information. If you start feeling embarrassed, frustrated or worried about your memory, perhaps distract yourself by doing something else that gives you pleasure.
Sometimes you can’t make your feelings of anxiety go away. Your fears and worrying thoughts might start to take over, and you might find it hard to relax. Anxiety can cause physical symptoms, too—you might become more aware of your heart beating, feel tension or pain in your muscles, sweat more or breathe more quickly. If you notice these symptoms of anxiety for more than two weeks, it is important to seek medical assistance, as there are several effective treatments for anxiety.
I don’t go to art group anymore because I feel vague, and I can’t really put my mind to concentrating. I’ve lost my confidence and I’m not interested in the things I used to enjoy. I don’t sleep very well and I’m often really tired. Why is this happening to me? What did I do to deserve this? My son is very worried about me, and it gets me down no end.
Carol, 74
Carol lives on her own and has early Alzheimer’s disease. Her son describes her as having always been outgoing, bubbly and the centre of conversation, but now she is withdrawn. He says she always remembered friends’ birthdays, but now forgets them, which upsets her. She has not been attending her usual activities. It is natural for Carol to feel sad, which is a common feeling when people have dementia. If you have persistent feelings of sadness for more than two weeks, you may have depression, so it is important to see your doctor. Common feelings when you have depression include feeling constantly down, useless or hopeless, irritable and moody, losing interest in life and being unable to enjoy things. When
you are depressed you might have difficulty sleeping, eat too much or not enough, and have reduced energy. Symptoms of anxiety or depression are common when you have a memory illness like dementia. Your doctor may prescribe medication or refer you to see a psychiatrist or a psychologist for further assistance.
Lifestyle
As mentioned in Chapter 3, the way we live can affect our memory. Mental and social stimulation are important, but it’s also important to get the balance right. If you are doing too much, and are tired, your memory can let you down more than usual.
Keep doing the things you enjoy, even if this means you have to modify them to take part. If you are still working, consider speaking to your employer about your illness and your symptoms. It may be possible to keep working, with some alterations to your work role. You might like to consider doing some voluntary work, or checking with your local council for regular social activities that you could take part in.
Joy was working as a stock-controller at a supermarket when she was diagnosed with Alzheimer’s disease. She had done this job for nearly 25 years. Her friends at work had noticed that she was having memory lapses, and Joy was feeling anxious about her work performance. Her daughter suggested she talk to her boss about her illness and ask to do something else at the supermarket that did not require such keen memory, like stacking shelves.
Anne
I managed a bakery for 10 years, doing the paperwork, paying staff and working in the shop. I started to struggle with balancing the books and I felt constantly exhausted. I was asking the kids in the shop, ‘Where’s the butter?’ or ‘How long do we heat the pies for?’ It was hard on the staff. I had to keep asking them all the time. They wrote out a chart with instructions, but it got too much, and I decided to leave. Now I’m helping with my husband’s online retail business, packaging goods ready to be posted.
Mirka, 57, has Alzheimer’s disease
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