Barcelona Alzheimer Treatment & Research Center

faq

dementia and alzheimer’s disease

Alzheimer’s Disease (AD) is the most frequent form of senile dementia. Dementia is a syndrome that causes the loss of independence for self-care, and AD is the dementia which most frequently affects people older than 65. If it presents before the age of 65, it is called Alzheimer’s presenile dementia. As well as AD, there are other dementias which present different symptoms, for example dementia with Lewy’s bodies and frontotemporal dementia (more frequent in young people). However, all types of dementia require supervision and monitoring by third parties. We should do away with the concept of senile dementia and start talking about AD dementia.

Alzheimer’s always evolves. Survival can vary from a minimum of 2 to a maximum of 20 years after diagnosis, with the average time being 10 to 12 years. Once the first symptoms begin, the disease will pass through four phases until the death of the patient. This will not be the case if another illness or an accident causes death prior to that.

In the first phase (mild), symptoms appear as the functional loss of the more complex activities of daily living, the so-called complex instrumental activities, such as those where an idea or action needs to be processed, programmed and executed. These are the tasks that allow us to carry out social or work-related activities, learn new things and develop our potential intellect through introspection, imagination and the emotions. They are expressed through abstract perception of the world and the use of formal logic. This is the formal operational stage, acquired from the age of 12, and is the first to be lost when the disease is beginning to appear.

The second phase (moderate) begins when the more simple instrumental capacities of daily living start to become destructured: shopping, using money, controlling medication, maintaining appropriate hygiene or an appropriate diet; situations which are necessary for survival and self-care. Interaction with the environment begins to be lost and there is a growing inability to focus on more than one aspect of a stimulus. Egocentrism appears or worsens, as does the inability to adapt to changes of routine. This is the beginning of the loss of concrete operations, which were acquired between 7 and 12 years of age.

The third phase (serious) is characterised by the loss of the most basic capacities of daily living (nutrition, hygiene and control of the urinary and faecal sphincters). People affected need help in their basic care because they are no longer able to do this on their own. The have lost the capacity to understand information from sensory perception and their interaction with the environment. They are not capable of manipulating objects, and once an object disappears from sight, they cannot understand that it still exists. Sensorimotor skills, which are developed between birth and age 2, are destructured.

The order in which there functional capacities are lost is the reverse of that in which they were acquired; in the end, all that remains is emotional memory, the only thing that links them with their surroundings and the only way in which they can communicate: a smile, a hug or a kiss, but without knowing the when, who or why.

It depends on the stage of the disease and their own perception of their memory loss. It is common in classical AD that memory loss does not allow them to remember recent information. At first, being told that they have Alzheimer’s can be traumatic for them. However, later they forget what they have been told, and occasionally unconsciously deny the truth of it, because they don’t see that they have any problem, saying “I don’t know why they’ve brought me here if there’s nothing wrong with me and I can do everything perfectly well.”

Another situation is when the patient is aware of their state and has significant symptoms of depression because of it. In these cases it is better to postpone informing them of the diagnosis, with the family’s consent. The problem should be explained to the patient in the least traumatic way (“You have a memory problem that we are going to try to control”), without speaking the “magic” word that is terrorising them, redirecting this explanation along more positive lines.

As the illness continues to evolve, perception of the self is lost and the previous distress disappears. It is possible for altered behaviour to appear as a symptom, for example delirium or highly distressing hallucinations. These are not caused by the patient’s perception of the disease; they are actually symptoms of the disease itself, which they experience vividly. When this is the case, we will be obliged to treat the symptoms in order to control the anxiety and fear that they cause.

AD has a very low level of family heredity: only 1% of all AD cases are hereditary, and at least one progenitor and two or more family members must have it. They will all have the same mutation, and if the mutation is known, diagnosis can be made before symptoms even appear for carriers of a family mutation. Furthermore, the disease appears between 30 and 40 years of age.

Heredity should not be confused with genetics: hereditary genetic mutations are predetermined from the moment of conception. Genes are common and shared with family members. Only specific risk genes determine whether or not AD will appear throughout our lives. These genes are responsible for most sporadic cases.

However, AD is genetic: there are risk genes in our DNA which, in a determined moment of our life, and in combination with other environmental factors, toxins, lifestyle, etc., can determine the appearance of the disease, especially after the age of 65.

Not all AD patients become aggressive, although they do become more irritable and apathetic, which causes them to become less tolerant and more rigid. Some people begin suffering with depression when they become aware of their memory loss, which delays diagnosis in the majority of cases.

Managing aggression will depend on factors like:

– Previous personality: in people who are, for example, intolerant of frustration, controlling or manipulative as an adult, AD will make these symptoms more acute and more difficult to redirect. Reproach or insinuations from the carer can provoke an aggressive reaction, typically verbal and occasionally physical.

– Poor understanding of the problem on the part of the family, who attempt to make the person with dementia participate in situations that they do not understand. The situation worsens further if there was a prior difficult relationship.

– Establishment of a psychotic process (delirium or hallucinations) linked with underlying AD. This is when it becomes necessary to introduce specific treatment, given that the situation is distressing, both for the patient (who experiences it as though it were real) and for the family, who are not able to redirect it.

Changing memory can be improved through cognitive reinforcement and stimulation during the phases of learning and information recovery. Recent studies suggest a clear positive effect on neuropsychological functions of programmes of cognitive stimulation in the treatment of AD, enabling the disease’s progression to be slowed. Therefore, to achieve the maximum therapeutic benefit for patients in the mild to moderate stages of AD, the combined use of cognitive stimulation programmes and pharmacological treatment is recommended.

Yes, they are useful tools for improving attention span, reasoning, calculation, etc. They are an enjoyable ways of stimulating cognitive function.

No. In fact, there are no evidence-based studies demonstrating the therapeutic efficacy of video games or consoles for people with AD. There is, however, an interactive multimedia system, Smartbrain®, specially designed to stimulate cognitive capacities, which has been demonstrated to have real therapeutic efficacy in that it strengthens the effects of pharmacological treatment.

We recommend starting as soon as possible with daily use of a diary. If he gets into the routine of carrying his diary, noting down what he needs to do and checking it frequently every day, he will be more able to maintain his autonomy.

They shouldn’t drive. It has been shown that the presence of cognitive deterioration increases the risk of having an accident, as safe driving requires the integrity of cognitive functions such as attention, planning, visual recognition and visuospatial ability. It has also been shown that the progression of neurodegenerative diseases such as AD diminishes the capacity to detect imminent collisions, due to the combined reduction in these people’s cognitive and visual capacities.

The person with dementia is going to suffer a progressive decline in their abilities, which will affect their ability to make decisions and stop them from controlling or handling their economic, financial or legal affairs. That is why the family, from the very time of the diagnosis, needs to reflect on this issue and try to solve it, while the person with dementia is still able to make decisions. In that sense, it is advisable to consult a lawyer or a notary, who will be able to give the correct advice to fit the situation or needs of the person with dementia.

There is no single answer. Depending on the diagnosis, the type of disease and other factors like age, general health, intercurrent diseases… The evolution of dementia will vary depending on the individual case.

administrative questions

You need a referral request, which can be sent by fax to 93 419 35 42 or by email to unitatdediagnostic@fundacioace.com. Once the referral request has been sent, you may book an appointment by calling 93 430 47 20 or by sending an email to unitatdediagnostic@fundacioace.com.

The family doctor, a neurologist, a psychiatrist, a neuropsychiatrist or a social worker.

You can make an appointment by calling 93 430 47 20 or by sending an email to unitatdediagnostic@fundacioace.com.

You need; National Identity Document (DNI), list of current medication, cranial CAT or MRI scan, and a recent blood analysis including haemogram, biochemistry, vitamin B12, TSH, folic acid, syphilis serology and HIV. Social Security patients must also present their referral request and healthcare card.

The Fundació ACE Diagnosis Unit is located on C/ Gran Via de Carles III, 85 bis, By bus numbers 54, 43, 15, 59. Subway line 3 (L3, green) Les Corts station.

Call 93 430 47 20 between 14:30 and 15:00, Monday to Friday.

First, contact the centre manager on 610 59 59 43 (América Morera). The needs of the user and the family are assessed in an interview in the department, and you will be directed to the most appropriate resource.

cognitive stimulation

PPI is a therapeutic strategy founded on the presence of neuronal plasticity and based on cognitive neuropsychology, behaviour modification therapy and the person’s physical/mental/social state. The therapy aims to improve and/or slow the evolving clinical process in the short and medium term (Boada and Tárraga, 1990). This programme essentially consists in integrating different techniques to improve aspects of behaviour and personality. The application of rehabilitative techniques mainly influences four aspects of the person with dementia: cognitive, motor and psychosocial skills and the activities of daily living combined, this constitutes an integrated intervention.

In Fundació ACE centres, PPI is implemented from an interdisciplinary approach which can meet the needs of the person with dementia and their family in the different phases of the disease. Continued therapeutic attention is offered in the cognitive, physical, functional, psychological and social spheres.

The range of techniques used (cognitive psychostimulation, expression workshops, physiotherapy, occupational therapy workshops, preservation of basic activities of daily living, kinesiotherapy) are alternated in such a way that the person is active, awake and stimulated throughout the day, following a pre-established timetable and a familiar routine. Like this, the morning is used for more therapeutic activities which require more attention, such as cognitive psychostimulation workshops. In the afternoon, by contrast, activities are more playful and occupational.

10.00–11.00: Welcome and breakfast. Entertainment.

11.00–12.30: Cognitive stimulation workshop (structured sessions, organised into different homogenous working groups according to cognitive level).

12.30–13.00: Preservation of basic activities of daily living.

13.00–14.00: Motor/praxis stimulation workshop (different groups).

14.00–15.30: Lunch and conversation.

15.30–16.15: Preservation of basic activities of daily living.

16.15–17.30: Occupational therapy workshop (different groups and activities).

17.30–18.00: Farewell.

There are also small-group physiotherapy sessions during the day.

“Occupational therapy is the therapeutic use of self-care, work and play (leisure) activities to increase independent function, enhance development and prevent disability. May include adaptation of task or environment to achieve maximum independence and quality of life” (American Occupational Association [AOTA], 1986)

Occupational Therapy uses activity with the aim of preventing or delaying a person’s functional decline using training, grading, analysis of the function or training in technical assistance or adaptations to the environment.

The functions of an occupational therapist in a cognitive psychostimulation day centre, especially Fundació ACE centres, focus on the application and implementation of occupational techniques and training and stimulation of affected physical and/or mental functions. Specifically, a therapist runs cognitive stimulation workshops, praxis workshops (for people with diverse symptoms influencing areas that are affected, or compensating through adapting the activity, grading the difficulty, or assisting the person) and participates in the creation of new exercises.

After meeting the user, the occupational therapist collaborates in creating an intervention plan, programming activities based on the person’s needs, preferences and tastes. A therapist also reports to the family services director on the technical assistance and adaptations of the environment which need to be taken into account when assisting the person.

In addition to care tasks, the occupational therapist also carries out teaching activities, both for centre staff and through the Fundació ACE website. These online sessions offer information about how to care for a person with dementia in their home, whether in carrying out activities of daily living or instrumental activities, leisure activities or adaptation to the environment.

resources

The different Spanish Autonomous Communities and social and medical authorities offer a range of services and resources for people with dementia and their families, aimed at meeting the diverse needs that can arise when caring for somebody with dementia. Some important examples are: home care, helplines, day centres and day hospitals, residences.

Home care

The aim of the home care service is to lend personal support, care and help to people whose situation means they lack personal autonomy. It focuses on services that attend to domestic or household needs: cleaning, washing, cooking, etc.; and services relating to personal care and the activities of daily living (washing and personal hygiene, help getting dressed and eating, etc.).

This service is available privately or through subsidies. When the service is subsidised by the administration, its duration varies depending on the person’s social/family situation, their needs, the level of service that they require according to their level of dependency and the prescribed compatible services.

Helpline

This is a technical resource for at-home supervision over the telephone, which acts at a preventative level 24 hours a day. The helpline, although its installation is not advised for people with dementia who live alone, is often very helpful for relatives who live with the person with dementia in the event that they need to ask for help.

Therapeutic day centres and hospitals

The specific aims of these day care centres include restoring lost functions and cognitive stimulation. They run cognitive psychostimulation, motor and psychoaffective activities. They work at the same time on the preservation of the activities of daily living and skills re-education.

Their specific objectives are as follows: to recover and restore losses; to stimulate, delaying the progressive loss of capabilities; to optimise the remaining functional capacities; and to alleviate, meeting people’s needs.

Day hospitals and centres

Assisted day hospitals and centres offer supervision and assistance in the activities of daily living, complementing the care given by family members themselves. The aims of these services include: offering an appropriate environment, adapted to the needs of people with cognitive deterioration; favouring the preservation of people’s independence; offering support to families in caring for their relative with dementia.

Assisted living residences

These residential reception centres offer a permanent or temporary service in addition to integrated support in the activities of daily living for people with dementia. They can be accessed privately or through subsidies.

Currently, access to subsidies is through assessment under the Dependency Law. This assessment grants the applicant the rights to use services, depending on the level of dependency they are determined to have. Therefore, a person must be considered dependent according to the terms of that Law in order to access this assistance. A request must be made with the regional Social Welfare office to start the dependency assessment procedure.

No. The beneficiary contributes to financing the service according to their personal economic ability to do so. Economic capacity is determined in relation to the degree of dependency, income and the net assets of the applicant. The service costs the same whether the person occupies a subsidised place or is at a collaborating centre or a public centre.

The development of dementia is a changing reality, which depends on the development of the illness itself. The needs of the person with dementia and of their family will change as the illness progresses and makes the ill person become more dependent.

“When is the right moment to take them to a day centre or residence?” is not the question we should be asking. The questions carers should ask themselves are “Is my family member being well looked after?”; “Does he/she need any kind of care that we can not provide at home?” The answers to these questions are what should guide us to use the most appropriate resource.

Caring for a person with dementia is a long-term commitment, so the carer must be aware of the quality of the care they are giving and their own need for help or rest in order to continue giving them proper care. The decision to take a person with dementia to a day centre or a residence brings with it contradictory feelings (“Will he want to go?” “What if he doesn’t?” “Am I doing the right thing?”…). However, we must always remember that our aim is to give the person with dementia the highest quality, both in health care and in their environment, and that perhaps this is no longer possible at home.

People with dementia pass from being completely autonomous to needing 24-hour supervision. If a gradual transition is possible, it will be easier if the person gets used to living with somebody. At first, it may only be necessary for somebody to be responsible for controlling their medication or helping with shopping and eating, and they may not require continuous supervision. These questions may help to decide the type of care that the person with dementia needs: Are they still looking after their hygiene and physical appearance?, Are they taking their medication properly?, Are they eating well?, Are they keeping the house tidy?, Do they switch off the heater?, Do they switch off the gas?, Do they burn their food?, Do they act on unfounded ideas or suspicion?, Are they sensible in their actions and decisions?

Families are often advised to explain to the person with dementia that it is a question of recommendation by a medical professional to control and/or slow the deterioration process. It is also advisable to try to reach an agreement with them on a time commitment (until the next medical assessment).

It is recommended to continue with and to favour those activities and interests that the patient did before and continues doing. Try to avoid excess stimulation, if they are now attending a centre regularly.

clinical trials

Clinical trials are studies designed to understand the effects of a drug or procedure being researched.

In order to participate in one of these studies, a number of procedures must be carried out, depending on the particular research protocol. The person with dementia and the primary carer must attend all visits in the study, and inform the doctor running the trial of any change in the patient’s life, or any possible side effects that may arise.

Participation in a research study is free and voluntary.

All the information gathered will be treated confidentially.

The treatments in a clinical trial must have been tested previously in laboratories and in preliminary phases to guarantee their safety.

All studies must be approved by the strict standards of the Food and Drug Administration (FDA), the organisation which guarantees that people who decide to participate are treated in the safest possible way. They also have to be approved by an ethics committee.

Prior to participation in a clinical study, a full health check is carried out to reduce risks during the trial. The results of all tests have to be accepted; otherwise, the person will not be able to participate.

All of this doesn’t mean that it is impossible for potential risks to arise during their participation in the study. Therefore, all participants will have to sign an informed consent form which makes explicit their understanding of the risks and benefits involved in participation in a study.

Participants will have the opportunity to access new treatments and new, innovative diagnosis techniques, currently unavailable to the rest of the population, which might help with the development of their illness and improve their quality of life.

They will receive much more thorough, personalised medical monitoring with more frequent check-ups.

Participating in a clinical study will help other people with the same condition in the future, as it provides valuable data on how the treatment and the illness are advancing.

risk situations and protective measures

As deterioration advances and evolves, the person loses the ability to perform certain tasks, the understanding and consequences of their actions and the notion of the value of money. However, from a legal point of view, the person with dementia continues to have full legal capacity. This can lead to serious problems for the person and their family.

There are different legal instruments to protect people who have cognitive deterioration or dementia. The most appropriate will be that which offers them the protection they need, taking into account that there must be a balance between their safety and their liberty.

Power of attorney consists in the person with cognitive deterioration giving to another person(s) the power to dispose of particular assets or rights. This is a way to protect the person at an economic level.

Anybody in possession of consciousness and intentionality can name before a notary somebody to be their guardian in the event that they are declared not to have mental capacity. The person can also exclude other specific people from these functions, appoint substitutes and also establish how they want to be cared for and how they want their assets to be administered. Autotutela is a form of guardianship which today only exists in Catalonia, and takes place before a notary.

In this document, a person states their desires and instructions about health and social care that they want to be respected if they find themselves in a situation in which, due to different circumstances relating to their physical and/or mental health, they are unable to express them personally.

The living will document helps families as well as healthcare professionals to identify the best decisions for a person in situations where they are unable to express their own will.

The document is formalised before a notary or in writing before three witnesses. In the latter case, the witnesses must be of legal age, with full capacity to act and a minimum of two of them must not be related to the person either by marriage, de facto relationship, or be related by two or fewer degrees of consanguinity or affinity; nor may they have a financial relationship.

In order to establish power of attorney, guardianship or living wills, the notary requires that people going to formalise the cession of powers be in sound mind at the time when the proceedings are carried out; this means that in the majority of cases, this can only be done during the early stages of cognitive deterioration.

Legal incapacity is a judicial act which modifies a person’s legal status, making them subject to a regimen of protection. It is not the illness or deficiency in itself which makes incapacity status possible; rather, it is the inability to self-govern.

The idea is that it compensates for the deficiencies of those who, lacking sufficient capacity to manage alone, find that they need somebody to represent them or to reinforce their capacities. Incapacity, then, enables those who are in need.

The incapacity process is requested before a judge and may be initiated by a member of the immediate family. If there are no immediate family members, any person who is familiar with the situation can communicate it to the public prosecutor, who will initiate the process in that instance.