Frequently asked questions about Alzheimer’s

Alzheimer’s is the most common type of neurodegenerative disease and dementia; it corresponds to 7 out of 10 cases of dementia. It is estimated that dementia affects around 100,000 people in Catalonia, approximately 700,000 in Spain and 50 million people worldwide.

Alzheimer’s occurs more frequently in women. Therefore, being female is considered a risk factor. Two out of three new cases are diagnosed in women. A hormonal factor is believed to bear an influence, but the precise reason is not well understood.

Dementia is a general term used to describe a spectrum of disorders that progressively reduce a person’s cognitive abilities and which eventually interfere in their independence with respect to everyday life. Different neurological diseases can cause dementia, Alzheimer’s is the most common neurological disorder that produces dementia.

Alzheimer’s usually occurs in more advanced stages of life and therefore age is considered a risk factor. It is a neurodegenerative disease and as such it involves a pathological process and a decline in various cognitive abilities. However, these changes do not form part of the normal human ageing process. Although elderly people are occasionally forgetful or present a slight reduction in cognitive skills when carrying out certain tasks, Alzheimer’s disease involves much more than this because it implies a group of symptoms and progressive changes which require diagnosis and treatment.

In most cases the definitive cause of Alzheimer’s remains a mystery, the exception being patients who have a genetic mutation. However, researchers know that a very early indication, which develops several years before symptoms first appear, is the accumulation of two proteins in the brain; the β-amyloid and hyperphosphorylated tau proteins. These accumulations (known as plaques) spread to different areas of the cerebral cortex, following a very similar pattern shared by all Alzheimer’s patients. They interfere with normal neural function by inhibiting communication between neurons, thus preventing information from being processed normally, and eventually lead to neuron degeneration and death.

The age at which the symptoms of Alzheimer’s first appear varies from case to case. In general, they usually appear in people aged over 65 years. Beyond this age, the risk of developing Alzheimer’s doubles every five years. However, 1 in every 10 Alzheimer’s patients manifests the early symptoms of the disease before the age of 65.

Diagnosing Alzheimer’s is important so that the cause of the cognitive impairment can be determined and an appropriate treatment installed to minimise the symptoms, particularly in the disease’s early stages. Furthermore, the diagnostic process allows doctors to rule out any other, potentially treatable, causes of dementia. Confirmation of the diagnosis is also essential in order to obtain information that will help the patient and those around them plan for the future. If the disease is diagnosed at a very early stage, then the patient might be able to make decisions regarding their future and establish a short- and long-term plan insofar as family organisation and social support.

Alzheimer’s disease is confirmed through a clinical diagnosis. This means the doctor makes a diagnosis while considering the symptoms, neurological examination and any additional tests available in accordance with current medical standards. Additional testing usually involves cognitive tests (which assess memory and other cognitive skills), blood tests and a brain neuroimaging study, such as computed tomography (known as a CT scan) or magnetic resonance imaging (MRI). Depending on each case, the diagnosis may also involve a cerebrospinal fluid analysis (obtained via a lumbar puncture) or amyloid positron emission tomography (amyloid PET), which are both used to measure the amount of proteins accumulated in the brain of Alzheimer’s patients, as well as a glucose PET, which provides information about neuronal metabolism. Genetic tests are carried out in specific cases if there is a suspicion that the patient might have a hereditary form of Alzheimer’s.

There are currently no treatments available that can cure Alzheimer’s or stop its progression. Specific treatments for Alzheimer’s disease offer a clinical benefit since they reduce the cognitive and functional decline it causes.

In most people with Alzheimer’s disease, genetic factors may influence the risk of it developing (risk markers) but they are not the cause of the disease. Therefore, generally speaking Alzheimer’s disease is neither hereditary nor is it transmitted from parents to children. There is a rare form, called genetic Alzheimer’s disease (which corresponds to less than 1 in 200 of all cases), where the condition is caused by a genetic mutation that is passed down from parent to child and which develops at very early ages (20–50 years old).

In the case of nonhereditary forms, a family history of Alzheimer’s increases an individual’s risk of developing the disease, but it is not a determining factor. This means you can suffer from Alzheimer’s even though no one in your family has had it or, vice versa, you will not necessarily develop it just because your parents had the disease. On the other hand, given that it is a very prevalent disease in the elderly (especially those aged over 85), then it is quite likely that someone in an individual’s family has suffered from the disease if we consider not just their parents but also grandparents, aunts and uncles.

Difficulty remembering things is the main symptom, the first to appear and also the most characteristic of Alzheimer’s disease. However, there are other symptoms that appear throughout the evolution of the disease and which may coexist with memory problems from early stages or develop in more advanced stages. These other symptoms are: language expression problems, disorientation to time and space, and behavioural changes, such as apathy or a lack of inhibition.

Intervention programmes involving cognitive stimulation, physical activity and day-to-day activities have shown to produce a beneficial effect on patients with Alzheimer’s disease. There are different types of each these interventions but there is not enough evidence available to recommend one over the others. A minimum period appears to be essential for them to have a positive effect; two weekly sessions for cognitive intervention programmes and three hours a week for physical activities. The stage of the disease must also be considered as not all programmes are appropriate for all stages of the disease.

Alcohol and tobacco have a very negative impact on overall health and particularly on the brain. These habits can reduce blood flow and increase the risk of suffering a stroke or brain haemorrhage. In the specific case of Alzheimer’s patients, they are advised not to consume alcohol, or should at least reduce consumption, because it can produce disorientation and impair cognitive function while under its effects.

Driving a vehicle correctly and safely corresponds to a complex activity that requires the integrity of several cognitive skills, such as orientation, memory, coordination and mental agility. While in the early stages of the disease the symptoms are mild and they do not apparently affect the patient’s capacity to drive (they can even pass tests to renew their driving licence); however, it is known that Alzheimer’s increases the risk of suffering an accident. Accordingly, the corresponding laws and recommendations differ from area to area. In this context, if doctors observe cognitive decline and/or visouspatial and visuoperceptual functional impairment and/or difficulty interpreting traffic signs during examination, then these factors should lead them to recommend an abstinence from driving.

In very early stages of the disease, patients may travel as normal because they are still able to adapt to changes. However, little by little, this capacity is gradually lost, and it may prove harder for people with Alzheimer’s to cope with all the information about their new surroundings and the reorganisation of daily activities that is necessary when travelling, hence they should receive continuous supervision. Travelling can also imply an upheaval because of the change in routine, resulting in confusion and altered behaviours. To a large extent this exacerbation of symptoms is usually reversible as soon as the patient returns home and gets back to their normal routine.

Alzheimer’s patients live for an average of between 8 and 10 years after the diagnosis; however, some may live with the disease for up to 20 years. The life expectancy in each case depends on several factors, such as the rate of disease progression, which varies from person to person, the presence of other diseases and comorbidities, which may further exacerbate the condition and accelerate the loss of independence, and the care each patient receives.

Due to the disease’s progression and evolution, Alzheimer’s patients progressively lose their independence, that is, they become dependent on other people to perform their activities of daily living. The person or people who look after the patient are called caregivers. The caregiver may be informal and accepts the task of caring for the patient because of their emotional connection (relative, partner, friend, neighbour) or formal, as in the case of a professional health worker. The caregiver should make realistic plans for each stage of the disease, assessing the different possibilities available, while trying to respect the patient’s wishes and offer the best care possible, but always considering that as their dependence increases so does the time and effort required to look after them.

Sometimes the actual patient decides to receive continuous care in a nursing home. On other occasions, even though the patient would prefer to remain at home, there is no possibility of providing a caregiver in the home environment. While in other situations, although a caregiver is available, as the complexity and time required to care for the patient increases then the carer, particularly in the case of non-professional caregivers, is unable or does not know how to provide adequate care or they may suffer stress syndrome resulting in negative consequences for their own physical and mental health. Another obstacle that can rule out the possibility of home care is the dwelling’s infrastructure (no lift, doors and corridors that obstruct wheelchair circulation, etc.). Under these circumstances, admission to a residential care home is the best option, both for the patient, who will receive continuous, professional care in an appropriately adapted environment, and the caregiver.

Patients with Alzheimer’s can present marked behavioural changes in the form of irritability, aggressiveness or confusion, which may be accompanied by delusions and/or hallucinations. These changes may occur progressively or develop suddenly and are sometimes caused by changes in the patient’s routine or intercurrent processes, such as urinary tract or respiratory infections.

Altered sleep patterns are also common in moderate or moderately severe stages. Patients may often want to go to bed earlier because they wake up earlier or, alternatively, they cannot sleep and get up several times during the night. In severe stages, a loss of mobility and its associated problems is the main chronic complication related to Alzheimer’s.