What is Alzheimer’s Disease?
Alzheimer’s disease becomes more common as we age, affecting 8.5 percent of people over the age of 60 in Malaysia.
The changes in the brain that cause Alzheimer’s begin long before symptoms appear. The sooner it is diagnosed, the sooner treatment can begin to slow the progression of the disease, and the sooner people affected can start to plan for their life with Alzheimer’s disease. Memory loss and other symptoms of Alzheimer’s can be distressing and the thought of a dementia diagnosis can be overwhelming, so sometimes people avoid going to the doctors’ or try to hide their symptoms.
With or without a formal diagnosis, Alzheimer’s will progress, and an earlier diagnosis means you are forewarned and able to access support.
Alzheimer’s Disease Symptoms
Alzheimer’s disease is a life-limiting condition, but its trajectory is not always predictable. Some people retain good function for many years after diagnosis whereas others progress through the stages of Alzheimer’s rapidly. In addition, due to the sometimes fluctuating pattern of symptoms in early Alzheimer’s, different people may receive their diagnosis at different stages of their disease.
Symptoms in the Early Stages of Alzheimer’s Disease
The symptom most commonly associated with Alzheimer’s is short-term memory loss. Short-term memory loss, as opposed to long-term memory loss, means that you may be able to remember events from the distant past clearly, but often forget recent events or misplace things. Some changes in the way we communicate are common in the early stages of Alzheimer’s disease, including difficulty finding the right word or comprehending others, and a short attention span.
Symptoms in the Middle Stages of Alzheimer’s Disease
As Alzheimer’s disease progresses, people usually become increasingly confused and unsure about time, location and events. This can be distressing and frightening, and people may also become agitated, paranoid and occasionally aggressive. Being unable to consistently recognise family members can be upsetting to everyone involved.
Changes in mood or even personality are more common in the middle stages of Alzheimer’s, and is both a primary symptom of the disease and a secondary symptom caused by the distressing nature of other symptoms of the disease.
Some people’s symptoms fluctuate throughout the course of the day, often becoming more marked at night. Being in unfamiliar surroundings can make the confusion and agitation of Alzheimer’s more pronounced.
Symptoms in the Late Stages of Alzheimer’s Disease
In the late stages of Alzheimer’s disease, it becomes difficult to function independently. People may begin to struggle to stand or move without assistance. They may lose their ability to speak, to feed themselves and swallow, and to control their bladder and bowel movements. In the late stages of Alzheimer’s, people usually need support with activities of daily living and require significant input from caregivers, whether formally employed or family members. People with advanced Alzheimer’s are likely to need full time care to help them stay safe and make sure they don’t develop other conditions associated with immobility, incontinence, and dehydration or poor nutrition.
In very late-stage Alzheimer’s, care is palliative, meaning that it aims to manage the symptoms and comfort of the person through their illness. People with advanced Alzheimer’s who have developed problems with swallowing may become prone to serious chest infections. At the end stages of Alzheimer’s, loss of appetite is common and can be a normal and natural part of end-of-life.
How is Alzheimer’s Disease Diagnosed?
It can be difficult to recognise the symptoms of Alzheimer’s in yourself. Often, a family member is the one who first points out a worsening memory or unusual changes in functional ability or mood. Hence, it can be useful to have a loved one present at appointments for memory problems, as they may be able to give a more accurate and objective report of the symptoms.
Memory problems do not necessarily mean that you have Alzheimer’s or another form of dementia – it is not unusual to occasionally forget where you left your keys, and some people seem to have a naturally better memory than others – but lapses in memory that are becoming more frequent or distressing should be assessed by a doctor.
As memory loss and other symptoms of dementia are closely associated with ageing, they are sometimes brushed off as a natural part of the ageing process. However, dementia is not a part of normal ageing and its symptoms should be taken seriously, assessed thoroughly and managed effectively.
Memory problems can have a range of causes, including infections, fatigue, and certain medications, so it’s important not to try and self-diagnose. Whatever the cause of memory loss or other changes, a doctor can help you to understand and manage them.
Your GP may refer you to a specialist memory clinic, where you may see a geriatrician – a doctor who specialises in conditions related to ageing; a neurologist – a doctor who specialises in conditions of the brain or nervous system; or a doctor who specialises in psychiatry of old age.
Tests may be done to rule out other causes of the symptoms you’re experiencing, including blood tests and general health checks. Your eyesight and hearing may be considered as factors contributing to your symptoms. There are also questionnaires that doctors use to assess short- and long-term memory function, awareness of place and the date, and your ability to concentrate. These may include tasks like remembering a series of words and repeating them later in the examination.
Medical imaging scans such as CT or MRI scans can be performed to look for the changes in the brain associated with Alzheimer’s, or to rule out other conditions relating to the structure of the brain. These scans would be able to show if someone had, for example, had a stroke, or a lesion or mass in the brain. This would mean an alternative diagnosis and a different course of treatment.
Dementia vs Alzheimer’s
Sometimes, we hear the terms Alzheimer’s and dementia being used seemingly interchangeably. While Alzheimer’s is the most common form of dementia, there are many other forms of dementia, including Lewy body dementia, vascular dementia, and Parkinson’s dementia. Although they all fall under the same umbrella term of dementia and share common symptoms, the causes and disease pattern can differ. Vascular dementia, for example, is characterised by a ‘stepped’ decline pattern; periods of stable function alternate with sudden rapid decline to another period of stable, but reduced, function. Alzheimer’s, by contrast, tends to follow a more steady and gradual pattern of deterioration. The areas of the brain affected and the way the changes develop differentiates the different forms of dementia.
Learn more about the difference between dementia and Alzheimer’s here.
Alzheimer’s Disease Causes
Alzheimer’s is caused by physical changes in the brain. Proteins that deposit within our brain tissues over time may prevent some of the natural chemical signals – neurotransmitters – from transmitting information properly. Certain areas of our brain will then begin to shrink, starting with the parts associated with memory.
The causes of these changes are not fully understood, and we do not know why it happens to some people more than others.
There are some factors that correlate to Alzheimer’s disease but which do not cause it. Aging is the most significant risk factor associated with Alzheimer’s disease. People with a history of cardiovascular disease are also more likely to develop Alzheimer’s. This may be because some of the risk factors for cardiovascular disease also contribute to Alzheimer’s, rather than it being a direct cause. Strong risk factor for cardiovascular disease which are also thought to be related to Alzheimer’s include:
These are risk factors known to contribute to a number of serious diseases, and following a healthy lifestyle is the most important thing you can do to prevent serious health conditions including Alzheimer’s disease.
Alzheimer’s Disease Treatment
There is no cure for Alzheimer’s, but there are some treatments which can help to slow the progression of symptoms.
Medication for Alzheimer’s Disease
Medications known as acetylcholinesterase inhibitors help to strengthen the communication between nerves within the brain, slowing the expression of Alzheimer’s symptoms. Another medication called Memantine may also be prescribed to slow down progressive memory loss.
Antidepressants are also often prescribed for people with Alzheimer’s. Sometimes, this is to treat depression which may go alongside Alzheimer’s disease. Other times, they are used to help to reduce symptoms of agitation, aggression, or extreme distress. People who become extremely distressed or aggressive to the point where they are at risk of hurting themselves or others may also be prescribed medication to help them relax and calm down during those episodes.
Even with medication, Alzheimer’s disease is progressive, meaning that it worsens over time. Management of symptoms is therefore the main aim of Alzheimer’s treatment, and this is largely non-medical.
Non-Medical Treatment for Alzheimer’s Disease
Non-medical treatments can take the form of support services to help maintain independence and make up for any changes in functional ability. Therapy sessions with cognitive therapy and cognitive stimulation specialists can help to improve or prolong memory and function.
Managing Alzheimer’s also means managing a person’s mood. It is normal to feel depressed and anxious about having Alzheimer’s, and as it advances, that expression of depression may become a larger and larger part of life. If short-term memory problems seem insurmountable, reminiscence therapies may help; a ’life story’ project can be incredibly therapeutic for a person with Alzheimer’s and their family and loved ones, and can help any professionals to understand the values – and value – of the person beyond the disease.
Communicating with a Person with Alzheimer’s
Everybody is different and patterns of disease can vary from person to person and fluctuate over time. In the early stages, people with mild short-term memory loss may be able to be easily reorientated to situations with a gentle reminder.
Keep Communication Easy to Follow
Being mindful of a possibly reduced attention span and memory loss is important when talking to someone with Alzheimer’s disease. Use shorter sentences and be clear about choices so it’s easier for them to follow.
People with Alzheimer’s may find it hard to retain information for a length of time, so a conversation with someone who has poor short-term memory may be repetitive. It can be frustrating to be asked the same question again and again, but it’s important to remember that in their perspective, each time you answer will be the first time they’ve ever heard it. If someone doesn’t know that you’ve answered the same question multiple times, they will not understand the frustration and anger that accompany your answers and may find the change in mood upsetting or frightening.
Re-orientating People with Memory Loss
People with short-term memory loss who have clear memories of times in the past may sometimes seem to be living in that time – it is not uncommon for someone with Alzheimer’s to mistake their son for their husband, or to ask the whereabouts of someone who passed away some years ago. These sorts of memory lapses can be upsetting for everyone, and it’s not always easy to judge how to respond to them. If someone with Alzheimer’s disease can be easily reminded and brought round to the present day, that may be the best course of action. If they cannot retain information well, to constantly remind them that they’re wrong or that the person they’re looking for has died might feel unnecessarily cruel and unlikely to benefit anyone. People’s memories can fluctuate with Alzheimer’s, so these things have to be judged day by day, minute by minute.
Unusual Situations and Important Decisions
While hospital trips or stays in unfamiliar surroundings are sometimes unavoidable, being out of the well-known home environment can make Alzheimer’s symptoms worse and may be confusing and frightening. If a person with Alzheimer’s usually needs someone who knows them to be around and advocate them, this might not always be possible during a stay in hospital. Some organisations advocating for people with communication difficulties recommend making a document to explain the needs of the individual when they’re unable to express their needs themselves. This may be as simple as a list of foods and television programmes the person likes, or may go into more detail about their life and the sorts of things that are important to them and that they might like to talk about.
Having Alzheimer’s disease does not automatically mean that that person is unable to make important decisions, such as those about medical treatment. Judging whether someone has, or lacks, capacity to make those decisions needs to be based on the individual and the situation. A pragmatic approach would be to expect that, at some point, a person with advancing Alzheimer’s disease will no longer be able to make informed decisions about important things, and it may be appropriate to nominate an advocate or make a legal statement detailing their future wishes about medical treatment – an Advanced Care Planning.
Can Alzheimer’s Disease be Prevented?
Due to our limited understanding of the causes of Alzheimer’s, there’s currently no sure way to prevent Alzheimer’s disease. However, we do know some of the risk factors for Alzheimer’s and many of them can be managed or modified by following a healthier lifestyle. Besides Alzheimer’s, healthy lifestyle choices can help to prevent a range of serious illnesses like type 2 diabetes, some forms of cancer, and cardiovascular disease. Here are some tips that may help to reduce your risk of developing Alzheimer’s:
- Quit smoking: Smoking is a risk factor and cause for many health conditions. Cutting down on smoking and quitting altogether can have a tremendous positive impact on the health of you and your loved ones, and to prevent life-threatening diseases. It’s never too late to quit.
- Reduce your alcohol intake: Drinking too much alcohol can increase your risk of several forms of dementia, as well as some cancers, cardiovascular and liver disease. Drink in moderation, if at all, to keep these health conditions at bay.
- Adopt a healthy diet: Adjust your diet to one that’s low in fat and sugar and high in fruit and vegetables, lean protein and complex carbohydrates, for greater overall health.
- Getting plenty of exercise: Exercise seems to directly improve both physical and mental function, as well as help us maintain a healthy weight.
- Staying in shape: Making sure you stay a healthy weight through good diet and exercise improves overall health and reduces the risk of serious illness, or complications from pre-existing conditions.
Pick up other tips that may help to reduce your risk of dementia here.
In addition to making healthy lifestyle changes where you can, an important way to stay healthy is to manage chronic conditions well and attend routine check-ups and tests. Staying healthy is a lifelong process.
Living with Alzheimer’s Disease
If you have been diagnosed with Alzheimer’s, you are likely to be feeling a range of emotions and trepidation about the future. However, the good thing is that having a clear diagnosis means that you have a little more information about what to expect, what to do about it, and how to find support.
Should a family member or close friend be diagnosed with Alzheimer’s, it can be helpful to find out what kind of support is out there, both for them and for you. As a disease with progressive deterioration, family members often find themselves gradually taking on more of a caregiving role as time goes by. Being able to foresee and identify the point at which you’ll need additional help can be useful.
A formal package of care planned can help your loved one stay safe and support your family through difficult changes. Having care in the home can mean supporting independence as well as making up for fluctuating or deteriorating abilities.
Whether you have been diagnosed with Alzheimer’s or are caring for a loved one with the condition, always keep in mind that you are not alone and don’t be afraid to reach out for help.
- Alzheimer’s Disease Foundation. “The Progression of Alzheimer’s Disease and Other Dementias.” Alzheimer, adfm.org.my/the-progression-of-alzheimers-disease-and-other-dementias/.
- World Health Organization (2020) Dementia. who.int https://www.who.int/news-room/fact-sheets/detail/dementia
- Venkataraman, A., Kalk, N., Sewell, G., Ritchie, C. W., & Lingford-Hughes, A. (2017). Alcohol and Alzheimer’s Disease—Does Alcohol Dependence Contribute to Beta-Amyloid Deposition, Neuroinflammation and Neurodegeneration in Alzheimer’s Disease? Alcohol and Alcoholism https://doi.org/10.1093/alcalc/agw092
- McKeown, Jane; Clarke, Amanda; Ingleton, Christine; Ryan, Tony; Repper, Julie (2010). The use of life story work with people with dementia to enhance person-centred care. International Journal of Older People Nursing. https://doi.org/10.1111%2Fj.1748-3743.2010.00219.x
- Rusanen M, Kivipelto M, Quesenberry CP, Zhou J, Whitmer RA. Heavy Smoking in Midlife and Long-term Risk of Alzheimer Disease and Vascular Dementia. (2011) Arch Intern Med. https://jamanetwork.com/article.aspx?doi=10.1001/archinternmed.2010.393
- National Institute on Aging (2019) What Do We Know About Diet and Prevention of Alzheimer’s Disease? https://www.nia.nih.gov/health/what-do-we-know-about-diet-and-prevention-alzheimers-disease
- Smith, M., Robinson, L., & Segal, J (2020) Preventing Alzheimer’s Disease. HelpGuide. https://www.helpguide.org/articles/alzheimers-dementia-aging/preventing-alzheimers-disease.htm
- Hospis Malaysia (2017). [online] Advance Care Planning: Decision making for the end of life . Available at: https://hospismalaysia.org/wp-content/uploads/2017/02/Advance-Care-Planning.pdf