Frequently asked questions

Dementia is both a general term and a neurodegenerative condition that includes a wide range of specific medical conditions. It entails loss of memory, language, problem solving and other thinking skills that are severe enough to interfere with daily living. Alzheimer's disease accounts for about 60 to 80% of cases. Vascular dementia, which occurs due to microscopic bleeding and blockage of blood vessels in the brain, is the second most common cause of dementia. Those who experience brain changes from several types of dementia simultaneously have mixed dementia. There are many other conditions that can cause symptoms of dementia, including some that are reversible, such as thyroid problems and vitamin deficiencies. Dementia with Lewy bodies is a condition associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain. Frontotemporal dementia affects the front and sides of the brain (the frontal and temporal lobes).

Dementia is a syndrome, that is to say, it designates the set of symptoms that appear during different illnesses (memory loss, difficulty in orientation, etc.) and that affect the functioning of the brain. Alzheimer's disease is the most common form of dementia, accounting for about 60% of dementias.

We cannot fully protect ourselves against dementia. However, it is possible to reduce the risk or delay its onset. A healthy diet, memory training, regular physical activity and maintaining a social life allow the brain to resist the decline of mental faculties. As a general rule, what's good for the heart is also good for the brain. In addition, problems such as high blood pressure, sleep disorders, hearing and visual disorders must be taken seriously and treated in time.

The first point of contact is the family doctor. After an interview about medical history and current disorders, additional exams and tests are performed. If the result is abnormal or uncertain, the person is referred to a specialist - usually a neurologist.

While memory loss is one of the most well-known signs of dementia, it's not the only symptom. Possible signs include:

• Memory problems: short-term memory is the first to be affected. The person misses appointments, forgets names, important personal information and events.
• Language disorders: often, the person cannot find the words. Attempts to paraphrase, fails to finish sentences, or avoids conversations.
• Orientation difficulties: The person has increasing difficulty finding their way to familiar places. Time orientation may also be affected: the person may not know what day it is, whether it is morning or night, or even what season it is..
• Difficulties carrying out daily activities: The person has difficulty carrying out daily tasks, such as paying bills or planning purchases.
• Unusual behaviour: sometimes the person becomes suddenly suspicious, anxious, apathetic or irritable, which can lead to isolation.

Currently, there is no medicine capable of curing dementia. At the beginning of the disease, it is possible to use “procognitives”, drugs that delay the progression of the disease in some patients.

In order to preserve the maximum quality of life and reduce problems and symptoms, the doctor can prescribe different treatments: occupational therapy (exercises related to routine tasks such as managing appointments), speech therapy (logopedia), psychological support or physiotherapy.

Other interventions such as music therapy or adapted physical activities such as dance or gymnastics can improve the person's well-being and have a positive effect on their mood and/or motor skills (walking, balance).

In Portugal, it is generally estimated that there are around 200,000 people living with dementia. It is estimated that there will be around 352,000 in 2050.

In the world, estimates indicate about 55 million people. Current projections point to 78 million in 2030 and close to 153 million in 2050. Most of this increase will occur in developing countries.

More than a hundred different active substances are currently the subject of clinical studies. The development of a drug is a real challenge, because the causes and mechanisms of dementia are still not fully understood. In general, the first symptoms only appear in everyday life after several years. The brain alterations detected at the time were already at an advanced stage, making it difficult to retrospectively determine their cause and evolution. To this day, Alzheimer's disease remains, unfortunately, incurable.

Receiving an Alzheimer's diagnosis is a real shock. Even if each person reacts differently, it will take some time for everyone to fully assimilate this announcement. The good news, despite the circumstances, is that the sooner the disease is diagnosed, the greater the chances of coping well with this reality.

Faced with this news, the first recommendation is to know how to find refuge in the people around us. Even if it is difficult to announce everything to your loved ones, this step is very important and will allow your loved ones to better understand your situation. As the disease progresses, the presence of caregivers will become increasingly important. Don't hesitate to discuss it with your immediate family, your children, brothers and sisters or even your trusted close friends.

Also allow yourself time to respond better and go through the different normal steps in reacting to this news. Finally, don't hesitate to ask professionals for help if needed.

For several reasons:

• There are a large number of conditions that can cause dementia, and not all of them have the same process or treatment.
• Sometimes, the decline in memory and the ability to carry out certain actions is not related to dementia, but to another treatable illness, such as depression, medication problems, underactive thyroid gland, or another. In such cases, timely diagnosis and treatment can lead to significant improvement or cure.
• In the case of people who actually suffer from the disease of dementia, it is likely that a relatively early diagnosis will allow for appropriate treatment to alleviate the effects of the disease.
• Diagnosing the disease of dementia allows a sick person and their family members to have an idea of what they are going to face. An early diagnosis makes it possible to clarify the situation and facilitate the planning of daily life for patients and their families. Those interested can also, at an early stage of the disease, make important decisions for the future independently. Prior knowledge of the diagnosis can also allow family members to better cope with the situation.

Ageism refers to stereotypes, prejudice, and discrimination towards others or oneself based on age. Ageism affects everyone. Children as young as 4 years old become aware of age stereotypes in their culture. From that age on, they internalise and use these stereotypes to guide their feelings and behaviour towards people of different ages. They also rely on cultural age stereotypes to perceive and understand themselves, which can result in self-directed ageism at any age. Ageism intersects with and exacerbates other forms of disadvantage, including those related to gender, skin color and disability.

Policy and law can address age-based discrimination and inequality and protect the human rights of everyone, everywhere. Educational activities can increase empathy, dispel misconceptions about different age groups and reduce prejudice by providing accurate information and examples against stereotypes. Intergenerational interventions, which bring together people from different generations, can also help to reduce intergroup prejudices and stereotypes.​

An informal caregiver is a person who provides care to someone in need within the context of an existing relationship, such as a family member, friend or neighbour. The care provided varies greatly from case to case. They may be limited to support in financial management or in planning (or carrying out) purchases, or even in scheduling appointments and their follow-up. They can also extend to help with cleaning the house, cooking meals, personal hygiene.​

It is difficult to know for sure how many informal caregivers there are in Portugal. It is estimated that there were around 11,000 recognised informal caregivers, of which close to 2,700 were granted a subsidy (see Diário de Notícias of November 5, 2022). However recent surveys point to much higher numbers: 800,000 according to Caregivers Portugal, 1.4 million according to the 2020 survey by the Movimento Caring for Informal Caregivers.​

To benefit from informal caregiver status, you need to meet the following requirements:

• have legal residence in Portugal;
• be 18 years old or over;
• have physical and psychological conditions;
• being a husband/wife, partner or relative up to the 4th degree;
• not be entitled to a disability pension.

To carry out the request, you will have to submit the Application for recognition of the Statute of the Informal Caregiver in the Social Security services, or fill in the digital forms (models CI1, CI 1/1, CI2, CI 2/1, CI 1 2) on the portal of Direct Social Security.

In doing so, you may benefit from support measures, including Caregiver Rest. You will be able to get help from a network of reference professionals, access a mutual help group, obtain specialized information, and access training.

Socio-spatial inequalities are the set of inequalities:

• individual (e.g., income, gender, membership of a minority);
• access to resources and opportunities (e.g., having a good transport network, having access to healthy food stores, a gym, a green area close to home);
• exposure to (un)favourable environments (e.g., living in an area that is more or less polluted, more or less exposed to traffic or noise).

Adding the "spatial" dimension to something that is often described as "social" reminds us that where we live matters.

Yes, women tend to be more affected than men. The reasons are still not very clear. The hypothesis that the difference is due to the greater life expectancy of women may be part of the explanation, since the risk of developing the disease increases with age. However, life expectancy is not enough to explain the difference. Some studies point to differences in hormonal balance. Others mention risk factors that are more present in women, such as hypertension, hyperlipidemia or diabetes, when compared to men in the same age group. It is likely that the difference results from complex interactions involving biological, cognitive, and social role differences attributed to men and women throughout life and after entering retirement. The investigation has not yet allowed to answer conclusively.​

Geographical gerontology - which, in fact, could be called gerontological geography - results from the intersection between gerontology (the study of the elderly population, the physical, mental and social processes that characterise it and the implications for society) and geography (the study of distributions and spatial processes and relationships between human beings and their environment). It can be defined, following Mark W. Skinner in his excellent book "Geographical Gerontology" (coordinated by him, by Gavin J. Andrews and Malcolm P. Cutchin), as the discipline "that encompasses the application of geographic perspectives, concepts and approaches to the study of aging, old age, and older populations" (Skinner et al. 2018).

The expression is often used in research that seeks to assess how the place where we live influences our health. It refers to the landscape built by societies and where human activities take place. It includes buildings, parks, support infrastructures. The built environment of the area of residence corresponds to the landscape we can see when we leave our house and walk around. It can influence us positively or negatively: an area of residence without vegetation may deter us from walking; a peaceful tree-lined street, with the shadows it provides in summer, can encourage people to go for a walk. Recent research tends to demonstrate that the built environment plays a role in health-related behaviours and social interactions - which may play a role in dementia onset and in dementia post-diagnosis trajectory.

We want to involve people living with dementia and informal caregivers as co-researchers and co-producers of the project, not just as subjects of study. Therefore, several entities have joined us, such as the National Association of Informal Caregivers or the Alzheimer's Association.

People living with dementia and informal caregivers will, of course, be surveyed through questionnaires, through walking interviews and through the preparation of a participatory mapping process. But, more than providing valuable and rich information about their lives, they will also have a voice in the preparation of the instruments. Methodologies, questionnaires, interview guides, events (seminars, webinars) will be done together with several people with dementia and informal caregivers.