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Advice for carers: relatives and caregivers of people with Alzheimer’s disease

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Alzheimer’s

Alzheimer’s disease (or Alzheimer’s) is a condition that affects the brain.

Neuraxpharm provides medication alternatives for Alzheimer’s disease and once your doctor has determined your specific needs, they can prescribe the product that best adapts to your needs and condition.

Learn more about the symptoms, what causes the condition, how it is diagnosed, and the treatments available.

What is Alzheimer’s disease?

Alzheimer’s disease is a progressive condition associated with a decline in the cognitive function of the brain. It affects people in different ways, but the symptoms may include memory loss and difficulties with thinking, problem-solving and language. Alzheimer’s is the most common cause of dementia.

What are the main types of Alzheimer’s disease?

There are two main types of Alzheimer’s disease:

  1. Early-onset Alzheimer’s disease occurs in people under the age of 65 years. Sometimes referred to as young-onset Alzheimer’s disease, it is an uncommon form of dementia. The first signs of early-onset Alzheimer’s tend to appear between the ages of 40 and 60.
  2. Late-onset Alzheimer’s disease is the most common form of Alzheimer’s, occurring in people aged 65 years and over. It is progressive, which means that over time, more parts of the brain become damaged. This leads to more symptoms developing and the condition worsening.

How many people have Alzheimer’s disease?

Worldwide, nearly 50 million people have Alzheimer’s or related dementia. There are nearly 10 million new cases every year (1).

Alzheimer’s disease contributes to 60–70% of dementia cases and according to the World Health Organization, the total number of people with dementia globally is projected to reach 82 million in 2030 and 152 million in 2050.

Symptoms

The symptoms of Alzheimer’s disease progress slowly over several years. The rate at which they progress differs from individual to individual.

What are the symptoms of Alzheimer’s disease?

Research suggests that changes in the brain may occur 10 or more years before someone starts to show symptoms of Alzheimer’s disease.

The symptoms are generally mild to begin with and gradually worsen over time. They are sometimes confused with other conditions or initially put down to old age. Read the dedicated article on the 10 first symptoms of Alzheimer’s for early detection.

Alzheimer’s disease symptoms may include:

  • Problems with memory such as difficulty remembering recent events or conversations
  • Poor concentration
  • Increasing difficulty recognising people or objects 
  • Problems with planning, organising, problem-solving and decision-making
  • Confusion
  • Losing track of the days
  • Difficulties with speech and repeating words or phrases
  • Spatial and temporal disorientation (feelings of confusion about time and space)
  • Personality and behavioural changes such as low mood, anxiety, or lack of confidence
  • Problems performing spatial tasks such as judging distances, going up or down stairs or parking the car
  • Regularly misplacing items or putting them in strange places

What are the stages of Alzheimer’s disease?

Alzheimer’s disease is generally divided into four main stages: prodromal stage, early-stage, middle-stage, and late-stage Alzheimer’s:

1. Prodromal stage Alzheimer’s disease

The prodromal stage of Alzheimer’s disease is the early form of Alzheimer’s. At this stage, people will have some mild cognitive impairment, such as a worsening memory. They may have difficulty remembering names or following conversations, but they can still perform their usual routine activities.

2. Early-stage Alzheimer’s disease

In the early stages of Alzheimer’s, people can lead an independent life. They may still be performing normal daily activities such as driving, working, or taking part in social activities.

The main symptom during early-stage Alzheimer’s disease is memory lapses. This may involve forgetting about recent conversations or events, having trouble thinking of the right word, forgetting the names of people and places, asking repetitive questions, or misplacing belongings.

There may also be some behavioural and personality changes such as mood swings, increasing agitation or anxiety, feeling confused, finding it harder to make decisions, or showing poor judgment.

During the early stage of the disease, these symptoms may not be widely apparent, but family and close friends may notice them.

3. Middle-stage Alzheimer’s disease

Middle-stage Alzheimer’s is typically the longest stage of the disease. As it progresses, memory problems will get worse.

Someone with middle-stage Alzheimer’s disease may find it even more difficult to recall simple things such as the names of people they know, and they may struggle to recognise loved ones. They may require a greater level of care.

Other middle-stage symptoms that may develop include:

  • Increasing confusion – for example, losing track of what day it is
  • Feelings of disorientation and a tendency to wander and get lost in familiar surroundings
  • Obsessive, repetitive, or impulsive behaviour
  • Increasing changes in mood including depression, anxiety, and frustration
  • Changes in sleeping patterns, such as restlessness at night and sleeping during the day
  • Growing problems with speech and language (sometimes referred to as aphasia)
  • More difficulties performing spatial activities, such as judging distances and reaching for items
  • Development of delusions and suspicions or paranoia about family members, friends, and carers
  • A need for help with performing simple everyday tasks such as choosing appropriate clothing and getting dressed
  • Hallucinations

During the middle stage of Alzheimer’s, it is still possible for people to participate in daily activities, but they will increasingly need extra help and assistance.

4. Late-stage Alzheimer’s disease

In the late stages of Alzheimer’s disease, the symptoms are increasingly severe. It can be distressing for the person with the disease, as well as for their family and friends. 

In the late stages, an individual may lose their ability to understand what is going on around them. Any hallucinations and delusions may become worse and they may feel angry and act aggressively.

Other late-stage symptoms that may be experienced include: 

  • Loss of speech
  • Mobility issues
  • Difficulties sitting and changing position
  • Problems eating and swallowing (sometimes referred to as dysphagia)
  • Urinary and bowel incontinence
  • Increased vulnerability to infections such as pneumonia
  • Severe weight loss
  • Significant memory loss

During the late stages of Alzheimer’s, full-time care, and round-the-clock assistance with washing, getting dressed, using the toilet, eating, drinking and moving may be required.

What are the early signs of Alzheimer’s disease?

One of the earliest signs of Alzheimer’s is memory loss. Individuals may become more forgetful than usual. Examples include forgetting important dates, events, or recent conversations. Someone with the early symptoms of Alzheimer’s might ask for the same information several times and rely on memory aids like sticky notes and reminders on mobile phones.

Causes, risk factors and life expectancy

Although it is still unknown what triggers Alzheimer’s disease, there are several factors that are known to increase the risk of developing the condition.

What causes Alzheimer’s disease?

Alzheimer’s disease is thought to be caused by a build-up of proteins in the brain which form abnormal structures called ‘plaques’ and ‘tangles’. Scientists do not know exactly what causes the process to begin, but it starts many years before the symptoms appear.

As the disease progresses, nerve cells in the brain (neurons) are lost. As the neurons become affected, there is a reduction in chemical messengers (neurotransmitters) that are responsible for sending signals between brain cells. These progressive changes in the brain affect a person’s ability to remember, think, communicate and solve problems.

Is Alzheimer’s disease hereditary?

Many people worry about developing Alzheimer’s disease, especially if a family member has been affected by the condition. However, a family history of Alzheimer’s does not necessarily mean that other family members will also develop it.

Although genetics can contribute to the risk of developing Alzheimer’s disease, the actual increase in risk is considered small. Researchers have identified versions of more than 20 different genes linked to an increased risk of Alzheimer’s. However, studies have found that having one of these versions may only have a small effect on the likelihood of developing the disease.

Who gets Alzheimer’s disease?

Although it is still not really understood what triggers the build-up of proteins in the brain which leads to the development of Alzheimer’s disease, there are several factors that increase the risk of developing the condition. These risk factors include:

  • Age – this is the single most significant risk factor. Alzheimer’s disease mainly affects people aged over 65. In fact, it is the most common cause of senile dementia throughout the world for individuals between the ages of 65 and 85 (2). After the 65, the likelihood of developing Alzheimer’s doubles every five years (3). 
  • Gender – more women are affected by dementia than men. In fact, worldwide women with dementia outnumber men two to one. Scientists do not know the exact reasons why women are more likely to get Alzheimer’s. Two possible explanations are that women tend to live longer than men on average and that there may be a link between Alzheimer’s and the loss of the hormone oestrogen after menopause. However, research into the link between Alzheimer’s and gender is still ongoing and several environmental and biological factors are under investigation. 
  • Family history – there is still a lot to be understood about genes and their importance. While genetics may play a part in the development of Alzheimer’s disease, it is thought to have a small effect on risk. However, in an extremely limited number of families, Alzheimer’s disease is a dominant genetic disorder. In these families, the disease tends to develop at a younger age, usually between 35 and 60 years (this is referred to as early-onset Alzheimer’s disease).
  • Down’s syndrome – children born with Down’s syndrome have a higher risk of developing Alzheimer’s disease if they reach middle age. This is because the genetic anomaly in chromosome 21 that people with Down’s syndrome have can cause plaques in the brain to build up, which can lead to Alzheimer’s.
  • Head injuries – there is growing awareness that people who have sustained a severe head injury may be at a higher risk of developing Alzheimer’s disease. However, more research is needed in this area.
  • Lifestyle – according to research, lifestyle plays a part in the increased risk of Alzheimer’s disease. People who live a healthy lifestyle are less likely to develop Alzheimer’s. This includes taking regular physical exercise, eating a healthy balanced diet, not smoking, and drinking alcohol only within the recommended limits.
  • Health conditions – several health conditions can increase a person’s risk of developing Alzheimer’s disease. These include diabetes, stroke, heart problems, high blood pressure, high cholesterol, and obesity.

The latest research suggests that other factors may also be related to the risk of developing Alzheimer’s, such as depression, social isolation, and hearing loss (3).

How long can you live with Alzheimer’s disease?

Life expectancy varies considerably depending on how old a person is when they develop Alzheimer’s disease. On average, a person with Alzheimer’s disease lives between three and 11 years after diagnosis, but some may survive 20 years or more. The length of time that someone with Alzheimer’s can expect to live depends on whether they were diagnosed early in the progression of the disease or later. The disease tends to develop slowly, and the symptoms gradually worsen over several years. The rate of progression varies widely from person to person.

Diagnosis

If you have concerns about memory loss or issues with planning and organising, you should make an appointment to see a doctor. Getting an accurate and prompt diagnosis is the best way to come to terms with Alzheimer’s disease and to make plans. It also ensures timely access to suitable treatment and support that may help.

How is Alzheimer’s disease diagnosed?

There is no single test for Alzheimer’s disease. Instead, the diagnosis is based on a combination of physical and mental assessments and tests.

In most cases, a local doctor is the first port of call. They will listen to you or your family member’s concerns and carry out some simple health checks and some thinking and memory tests to assess how different parts of your brain are working.

A common test used by local doctors in many countries is the General Practitioner Assessment of Cognition (GPCOG). Although it cannot make a diagnosis, the GPCOG may identify memory issues that require further investigation.

Blood tests may also be ordered to rule out other possible causes of the symptoms and a referral for a specialist assessment will be made if it is needed.

It is important to note that any simple tests your GP performs are only preliminary. If they suspect Alzheimer’s disease, they will refer you or your family member to a specialist at a hospital or memory clinic.

Tests to diagnose Alzheimer’s disease

Currently, there is no single, reliable test to diagnose Alzheimer’s disease accurately. However, if you are referred to a specialist trained in brain and mental health conditions at a hospital or memory clinic, they will conduct a full neuropsychological assessment using several different questionnaires and tools to obtain an accurate diagnosis.

The specialist tests will assess your mental and cognitive capabilities such as memory, concentration, attention span, problem solving, and language skills.

In addition to a series of clinical assessments, the specialist may also want to have a closer look at what is happening inside your brain and may recommend a CT scan or an MRI scan. These scans take detailed images of the inside of your brain and will help the specialist assess whether there is any damage to the brain and, if so, where it is. This is important because an accurate diagnosis will determine the best course of treatment and support required. It may also help predict any future issues that may develop.

Treatment and medication

There is no cure for Alzheimer’s disease. Medication may help temporarily reduce the symptoms, but it cannot eradicate it completely or prevent the disease occurring in the first place.

How is Alzheimer’s disease treated?

Medication

There are several medications that can be prescribed for Alzheimer’s disease to help relieve some of the symptoms.

Acetylcholinesterase inhibitors
The main treatments consist of acetylcholinesterase inhibitors. These medications increase the levels of acetylcholine, a substance in the brain that helps nerve cells communicate with each other. They can be prescribed by specialists such as neurologists or psychiatrists, or by a general practitioner if recommended by a specialist. Acetylcholinesterase inhibitors can be prescribed for people with early to mid-stage Alzheimer’s disease and can continue to be used as maintenance treatment as long as they provide therapeutic benefit. As with all medications, there may be some side effects, including nausea, vomiting, and loss of appetite. If you experience any side effects, it is important to talk to your doctor or pharmacist for advice. There are three different acetylcholinesterase inhibitors available. Some people respond better and experience fewer side effects with one type compared to others. Doctors choose the treatment that best suits each individual.
NMDA receptor blockers
NMDA receptor blockers are a class of drugs that work by blocking excess levels of a neurotransmitter in the brain called glutamate. They can be used by people with moderate to severe Alzheimer’s disease and may also be prescribed for those with severe Alzheimer’s who are already taking an acetylcholinesterase inhibitor. Some side effects, such as headache, dizziness, and constipation, may occur, so it is recommended that you speak with a doctor or pharmacist if you have any concerns.
Other medications
In the later stages of Alzheimer’s disease, people often develop severe behavioral and psychological symptoms. They may experience depression first, followed by anxiety, increased irritability, aggression, and hallucinations. In such cases, medications may be prescribed.

Therapy

Medication is not the only treatment option for people with Alzheimer’s disease. Therapy plays an important role in dementia care.

Cognitive stimulation
Cognitive stimulation is a popular and effective method for keeping the mind as active as possible. It involves participating in group activities and exercises aimed at improving memory and enhancing problem-solving skills. Cognitive stimulation often includes themed activities carried out over several weeks.
Cognitive rehabilitation
Another treatment option is cognitive rehabilitation. This involves working with trained healthcare professionals, such as an occupational therapist, and possibly a family member or close friend to perform everyday tasks. It enables individuals to maintain certain skills, remain as independent as possible, and cope better with daily life.
Reminiscence therapy
Many people with Alzheimer’s benefit from reminiscence therapy. This form of therapy typically involves looking at old photographs, holding favorite objects, or listening to music. These kinds of activities can help improve mood, well-being, and cognitive abilities. It is an enjoyable way for individuals to share their life experiences and cherished memories, encouraging them to think and talk about their past and remember important events and loved ones.

Intervention

Treatment for Alzheimer’s disease includes therapies and activities such as memory training, mental and social stimulation, orientation exercises, and physical activity programs. Other non-drug treatments may include art therapy, music therapy, and animal-assisted therapy. There is not much research on the effectiveness of non-drug treatments, but experts believe they can improve cognitive performance, prevent the decline of mental abilities, help people maintain their independence for as long as possible, and contribute to improved well-being and quality of life. Which treatments are most appropriate depends on several factors, such as:

  • Symptoms and their severity
  • Progression of the disease
  • Causes of certain behaviors
  • Life history and circumstances
  • Personality

Diet

A healthy, balanced diet is important for everyone, but for people with Alzheimer’s disease, poor nutrition can worsen behavioral symptoms and cause weight loss. In general, there is no need for a special diet for those with Alzheimer’s, and the following healthy eating recommendations apply:

  • Eat a balanced diet with a variety of foods, including vegetables, fruits, whole grains, low-fat dairy products, and lean proteins.
  • Limit foods high in saturated fats (e.g., butter, lard, cakes and biscuits, processed meats, etc.).
  • Try to reduce refined sugar intake (though in later stages of Alzheimer’s, when loss of appetite becomes a problem, adding a bit of sugar may help stimulate appetite).
  • Limit foods that are high in salt.
As Alzheimer’s disease progresses, loss of appetite and weight loss can become serious issues. There are several reasons why people with Alzheimer’s may not want to eat:
  • They may not recognize the food in front of them.
  • They may be unsure how to start eating.
  • New medications or changes in dosage may reduce appetite.
  • Lack of physical activity can decrease appetite.
  • A reduced sense of smell and taste may make food less enjoyable.
If someone is not eating enough and losing weight, doctors may recommend supplements to be taken between meals to add extra calories. From the middle to late stages of Alzheimer’s disease, people may have difficulty swallowing and an increased risk of choking while eating, so it is important for families and caregivers to remain vigilant.

Exercise

Regular exercise is highly beneficial for people with Alzheimer’s disease, helping to improve fitness, boost mood, reduce anxiety, lower blood pressure, regulate blood sugar levels, and maintain a healthy weight.
It is important to choose an activity that is safe and suitable for the individual and their abilities. Light exercise can include a short daily walk, some gardening, yoga or tai chi, or even dancing.
More research is needed on physical activity and how much it improves memory and slows the progression of Alzheimer’s disease.

Prevention

Since the exact cause of Alzheimer’s disease is still unknown, there is no definitive way to prevent the condition entirely. However, maintaining as healthy a lifestyle as possible can help reduce the risk of Alzheimer’s disease developing. 

Cardiovascular disease has been linked to an increased risk of Alzheimer’s, so steps to improve cardiovascular health may be beneficial. These include:

  • Stopping smoking
  • Reducing alcohol intake
  • Eating a healthy, balanced diet, including five portions of fruit and vegetables every day
  • Taking regular exercise
  • Monitoring blood pressure 

There is also some evidence to suggest that rates of dementia are lower in people who try to remain mentally and socially active. This could be achieved by volunteering in the local community, taking part in group activities, reading, socialising with friends, and trying new hobbies.

Scientific studies

There is still much that needs to be understood about the risk factors, diagnosis and effective treatment of Alzheimer’s disease. Research is helping scientists, doctors, and the global healthcare community to build a more detailed picture of what happens in the brain when Alzheimer’s disease develops.

There is a significant number of ongoing research projects into Alzheimer’s disease throughout the world.

In 2020, there were 121 unique therapies in clinical trials for Alzheimer’s disease, as registered on the global database clinicaltrials.gov. The largest category of drugs in these clinical trials is disease‐modifying agents that target the onset or progression of Alzheimer’s disease. There is also a growing number of drugs known as repurposed agents which have been developed for other diseases that may also treat Alzheimer’s effectively (4).

Researchers are keen to find a way to stop or delay disease progression. More work needs to be done in this area, but there is increasing understanding of how Alzheimer’s disease disrupts the brain. This has led to potential treatment options that ‘short-circuit’ the disease process (1). 

Future Alzheimer’s treatment developments may include a combination of different drugs. This is a similar approach to the treatment of certain cancers and HIV and AIDS which involve the administration of several medications.

Treatment strategies currently being investigated include:

  • Medications to target the build-up of the protein beta-amyloid (plaques) that are a characteristic sign of Alzheimer’s disease. Some drugs known as monoclonal antibodies may prevent clusters of plaques forming or remove them completely (5)
  • Drugs that prevent Fyn, a protein in the brain that interacts with beta-amyloid triggering a loss of connections between nerve cells (synapses) (6)
  • Experimental medications aimed at blocking the activity of certain enzymes involved in the production of beta-amyloid (7) 
  • Ways to prevent the protein tau twisting to form tangles – microscopic fibres that are another common characteristic of Alzheimer’s disease. Clinical trials are underway on tau inhibitors and vaccines (8) 
  • Researchers are looking specifically at the inflammation in the brain Alzheimer’s causes. A medication that may stimulate the immune system into protecting the brain from harmful proteins is being investigated (9)
  • Scientists are studying the effects of insulin on the brain and its function and how levels of insulin may affect Alzheimer’s disease (10)
  • A number of studies are exploring the connection between the development of Alzheimer’s and cardiovascular health (11) 
  • More work also needs to be done on the effects of taking hormones to prevent Alzheimer’s. Initial research into taking oestrogen-based therapy for at least a year during perimenopause or early menopause suggests it protects thinking and memory processes in women who are at a higher risk of developing Alzheimer’s disease (12) 

The development of new treatments for Alzheimer’s disease is a slow process requiring painstaking detailed research and analysis (13). While the pace can be frustrating for people with the disease and their families, who are waiting for new treatment options, there is optimism that progress is being made into improving the diagnosis, treatment, and prevention of Alzheimer’s.

 

Referenced sources

  1. Dementia. World Health Organization website. Published September 21, 2020. Accessed December 2020. https://www.who.int/news-room/fact-sheets/detail/dementia
  2. Kawas CH, Corrada MM. Alzheimer’s and dementia in the oldest-old: a century of challenges. Curr Alzheimer Res. 2006;3(5):411-419. doi:10.2174/156720506779025233
  3. What causes Alzheimer’s disease? National Institute on Aging website. Updated December 24, 2019. Accessed February 2021. https://www.nia.nih.gov/health/what-causes-alzheimers-disease
  4. Livingston G, Sommerlad A, Orgeta V et al. Dementia prevention, intervention and care. Lancet. 2017;390(10113):2673-2734. doi:10.1016/S0140-6736(17)31363-6
  5. Cummings J, Lee G, Ritter A, Sabbagh M, Zhong K. Alzheimer’s disease drug development pipeline: 2020. Alzheimers Dement (NY). 2020;6(1):e12050. doi:10.1002/trc2.12050
  6. Murphy MP, LeVine H III. Alzheimer’s disease and the β-amyloid peptide. J Alzheimers Dis. 2010;19(1):311-323. doi:10.3233/JAD-2010-1221
  7. Nygaard HB, van Dyck CH, Strittmatter SM. Fyn kinase inhibition as a novel therapy for Alzheimer’s disease. Alzheimers Res Ther. 2014;6(1):8. doi:10.1186/alzrt238
  8. Huang LK, Chao SP, Hu CJ. Clinical trials of new drugs for Alzheimer disease. J Biomed Sci. 2020;27(1):18. doi: 10.1186/s12929-019-0609-7
  9. Al Mamun A, Uddin MS, Mathew B, Ghulam MA. Toxic tau: structural origins of tau aggregation in Alzheimer’s disease. Neural Regen Res. 2020;15(8)1417-1420. doi:10.4103/1673-5374.274329
  10. Kinney JW, Bemiller SM, Murtishaw AS, Leisgang AM, Salazar AM, Lamb BT. Inflammation as a central mechanism in Alzheimer’s disease. Alzheimers Dement (NY). 2018;4:575-590. doi:10.1016/j.trci.2018.06.014
  11. Kellar D, Craft S. Brain insulin resistance in Alzheimer’s disease and related disorders: mechanisms and therapeutic approaches. Lancet. 2020;19(9):758-766. doi:10.1016/S1474-4422(20)30231-3
  12. Tublin JM, Adelstein JM, Del Monte F, Combs CK, Wold LE. Getting to the heart of Alzheimer disease. Circ Res. 2019;124(1):142-149. doi:10.1161/CIRCRESAHA.118.313563
  13. Savolainen-Peltonen H, Rahkola-Soisalo P, Hoti F et al. Use of postmenopausal hormone therapy and risk of Alzheimer’s disease in Finland: nationwide case-control study. BMJ. 2019;364:l665. doi:10.1136/bmj.l665
  14. Cavedo E, Lista S, Khachaturian Z et al. The road ahead to cure Alzheimer’s disease: development of biological markers and neuroimaging methods for prevention trials across all stages and target populations. J Prev Alzheimers Dis. 2014;1(3):181-202. doi:10.14283/jpad.2014.32
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Alzheimer's

Advice for carers: relatives and caregivers of people with Alzheimer’s disease

Alzheimer’s disease is a progressive and irreversible brain disease that is the most common cause of dementia. It impairs memory and cognitive ability, causing suffering and distress for individuals and often overwhelming families and carers. More than 50 million people worldwide are living with dementia, with the number forecast to rise to 152 million by 2050.