Living with
Alzheimer
Professional caregivers are well aware of the challenges involved in caring for patients with dementia. That is why they can help families learn how to provide care, understand the most important aspects of maintaining health, and avoid common situations of overprotection and burnout. Here, we will present several practical suggestions for the caregiver’s well-being, with the goal of preserving their quality of life:
It is very important for the patient’s caregiver to recognize when they need help, and to understand that seeking help will not distract them from their caregiving duties, but rather make them more effective. It is necessary to accept that feelings of exhaustion are common and even predictable in caregivers. These are normal reactions to a “limit” situation, but they require support. If these signs or reactions are detected, it is advisable not to hide them, neither out of a desire to avoid admitting that one is at the limit of their strength, nor out of fear of not being an excellent caregiver.
Request help from family members
Being able to delegate tasks and share responsibilities with other family members when you can’t manage everything is essential to prevent stressful situations that harm both the caregiver and the patient.
Aging involves a series of changes in people that can be summarized as follows:
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Variations in weight and height.
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Dental and periodontal diseases, as well as missing teeth.
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Sensory alterations such as atrophy of the olfactory bulb or decreased salivation, taste, and thirst perception.
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Changes in body composition.
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Altered immune response.
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Tendency toward constipation due to changes in the gastrointestinal tract or low fluid intake, for example.
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Coexistence of physical and mental illnesses, which can increase or decrease nutritional needs and may also limit the ability to obtain adequate nutrition.
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Physical weakness.
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Changes in purchasing power.
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Social isolation.
All of this, combined with the cognitive impairment associated with Alzheimer’s disease, leads to a series of eating behavior disorders in affected individuals. The most common consequences are malnutrition or undernutrition.
Undernutrition is the presence of a negative balance between what is consumed and what the body requires. In general, it is determined by the quality and quantity of nutrients and by how the body uses them to maintain an optimal functional state. Its consequences are numerous, with the following being particularly notable:
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Alterations in the immune system and the consequent increased risk of infections.
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Pressure ulcers.
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Poor wound healing.
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Immobility.
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Acute confusion syndromes.
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Hospital admissions and longer hospital stays.
- Individualized nutritional treatment.
- Diets that are highly nutritious but not very large in quantity.
- Maintain regular meal times.
- Enhance dishes with grated egg, oils, cream, or egg yolk, among others.
- Pay special attention to the presentation of the dishes.
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*]:pointer-events-auto scroll-mt-[calc(var(–header-height)+min(200px,max(70px,20svh)))]” dir=”auto” tabindex=”-1″ data-turn-id=”request-WEB:65be2914-ac9a-4b96-8998-23fc4c012d07-22″ data-testid=”conversation-turn-16″ data-scroll-anchor=”true” data-turn=”assistant”> Consider the use of nutritional supplements.
- Mantenir els horaris regulars.
- Realitzar àpats freqüents, molt nutritius i poc abundants.
- Consumir aliments rics en proteïnes com ara carns, peixos, ous i llegums.
- Menjar lentament en petites quantitats i en cas necessari modificar la textura dels aliments (purés o farinetes, per exemple). Evitar caldos i sopes molt líquids.
- Incloure la màxima variació d’aliments per evitar dèficits nutricionals.
- Sempre que es pugui, realitzar exercici físic. Recordi que el millor exercici és caminar.
- És important beure entre 1 litre i mig i 2 litres de líquid al dia, encara que no hi hagi sensació de set.
- Si el pacient no s’ennuega, els líquids es poden prendre en forma de caldos, sucs, infusions o aigua.
- Si s’ennuega sovint quan pren aigua, administrar begudes espesses. Es poden espessir els sucs amb espessants, preparar sopes en forma de purés o substituir la llet per iogurt, natilles o cremes. També es convenient donar gelatines, com una manera d’administrar aigua en forma sòlida.
- En cas de restrenyiment: és útil prendre 2 o 3 prunes en dejú abans d’esmorzar o un suplement de fibra.
- Mantenir la higiene bucal.
- Seguir els consells recomanats pel seu metge.
A person with dementia may perceive a threat or danger where none exists and react aggressively in situations that, for people who do not suffer from this type of illness, are harmless. These aggressive reactions are problematic and difficult to manage for the primary caregiver as well as for family members, as they may appear incomprehensible.
It may be an emotional response from the person with dementia when they feel rejected or are unable to carry out an activity correctly. It can also be motivated by anxiety, fear, or frustration:
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Not understanding the situation they are experiencing.
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Not remembering how to do things.
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Not being able to express their feelings.
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Not recognizing the people around them.
These reactions are often a way for a person with dementia to express their fear or distress in response to a situation or gesture they are not able to understand correctly. There is almost always a cause that triggers the reaction. Identifying it makes it possible to prevent its occurrence.
Avisar a la resta de persones
Informar-los del problema per evitar que desencadeni involuntàriament una reacció agressiva.
Preparar-los perquè puguin fer front a aquesta situació si es produeix.
Explicar la situació als nens.
Parlar del problema amb el metge o cuidadors professionals si no s’aconsegueix dominar la situació.
Reconfortar a la persona amb demència
Explicar-li què passa: quines són les persones presents, el que fan o on es troba.
Parlar-li amb veu tranquil·la, sense posar-se nerviós.
No allunyar-se de la persona. Intentar quedar-se en el seu camp visual.
Suggerir-li una activitat que pugui realitzar i deixar-li el temps necessari per tal que la dugui a terme, encara que ho faci malament.
Incontinence, defined as the loss of bladder and/or bowel control, is a common problem among people with Alzheimer’s disease or other types of dementia, especially in the later stages of the illness. Urinary incontinence is one of the most distressing health problems a person can experience. Those who suffer from it frequently feel discomfort and embarrassment. This condition affects fundamental aspects of daily life, such as rest, performing work activities, and/or leisure activities. Therefore, its consequences can be not only physical (skin lesions and hygiene problems) but also psychological, as affected individuals often show a tendency toward isolation and depression.
Incontinence can be managed by changing the patient’s routine, clothing, or environment. However, at some point, it may need to be accepted as a permanent condition of aging. It is very important to identify the different types of urinary incontinence in order to apply the most appropriate care plan and individualized treatment. Today, we know that urinary incontinence is not an irreversible process and can often be treated through physiotherapy, re-education of the patient’s habits, pharmacology, or surgery. However, when this is not possible, palliative treatment is used. The prevalence of urinary incontinence increases with age, being more common in women.
Stress urinary incontinence
This is the involuntary loss of urine caused by physical effort (exercise, coughing, laughing, sneezing, etc.). It primarily affects middle-aged women.
Urge urinary incontinence
This is the involuntary loss of urine associated with a strong, sudden urge to urinate, caused by an involuntary contraction of the detrusor muscle. It affects both sexes equally, especially in older age.
Mixed urinary incontinence
This type combines the two types of incontinence mentioned above.
Overflow urinary incontinence
In this type, urine leaks in small amounts without the patient feeling the urge to urinate. It is always secondary to urinary retention and may be caused by an obstruction or neurological injury.
Functional urinary incontinence
This is associated with mental illnesses such as Alzheimer’s, Parkinson’s, or depression. Although the urinary system functions normally, the patient is unable to control urination.
Si una persona amb Alzheimer ha començat a perdre el control de la seva bufeta o intestins, el primer pas més important és determinar possibles causes. Haurem de considerar el següent:
Condicions mèdiques
Infeccions urinàries, estrenyiment, o un problema de pròstata.
Diabetis, vessaments cerebrals, o un desordre dels músculs com la malaltia de Pàrkinson.
O una discapacitat física que fa més difícil que la persona pugui anar al bany.
Medicaments i diurètics
Els tranquil·litzants/sedants o medicació per dormir poden relaxar-se els músculs de la bufeta.
Les begudes com el cafè, refrescos i te podrien contribuir a la incontinència en produir un efecte diürètic donat que augmenten la necessitat d’orinar.
Environment and clothing
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Make sure the person can find the bathroom.
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Avoid obstacles on the way to the bathroom and ensure the path is well lit.
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Use simple, practical clothing that is easy to take off and put on.
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Consider using bed protectors or adult diapers.
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Keep sensitive areas of the skin clean with regular washing and apply creams or powders.
Dehydration
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It is important for the patient with Alzheimer’s to continue drinking fluids to avoid dehydration.
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Dehydration can lead to urinary infections and cause incontinence.
Communication
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Encourage the person to tell you when they need to use the bathroom.
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Be alert to small signs indicating the need to go, such as impatience, pacing, making unusual faces or noises, etc.
Advance planning
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Observe and recognize the person’s schedule and routine.
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Try to establish a fixed bathroom schedule. For example: first thing in the morning, every two hours during the day, immediately after meals, and just before going to bed.
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Identify when incidents occur and plan ahead.
Monitoring
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Check if the person has urinated and/or had a bowel movement.
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Help them clean themselves and flush the toilet.
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Keep sensitive skin areas clean and dry with regular washing and application of powders or creams.
Understanding
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Remember that incidents are embarrassing for the person.
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Try to avoid blaming or scolding them.
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When the person succeeds, praise, motivate, and give them confidence.
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If the caregiver is nervous, avoid speaking with the patient. Try to relax first.
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If the patient can read, use simple lists: daily schedules, medication, names, etc.
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If they cannot read, replace words with images: photos or drawings indicating the function of things.
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Speak with them frequently. Avoid isolation.
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Do not give information in advance. Provide the message at the moment it is relevant. For example, say “let’s go for a walk” when preparing to leave.
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Do not ask multiple questions at once: ask one at a time and wait for a response. Repeat the question with the same words if no answer is given, and be patient.
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Remember that the patient tends to summarize messages: identify what they mean and clarify it for them. Try to understand the idea when they use single words.
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Do not force a conversation if it is not possible. Avoid frustration.
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Identify yourself before starting a conversation; it helps the patient recognize you. Stay close without accessories that might confuse them (sunglasses, hats, etc.).
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Avoid pronouns. Always name the object or person you are referring to. Speak normally—do not talk to them as if they were a child, but show affection naturally.
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Use topics from the past to start conversations: their youth, profession, etc.
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Maintain a sense of humor without ridiculing them. Minimize mistakes with small jokes they can understand.
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Encourage the patient to imitate activities (e.g., brushing teeth, washing hands).
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Remember that sensory and physical problems in older adults can promote isolation. Ensure they always wear hearing aids or glasses if needed, and check their mouth: poorly fitted dentures or painful sores can reduce attempts to speak.
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Maintain eye contact during the conversation.
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Position yourself in front of them and at their level; you can sit beside them but in a way that allows them to see your face.
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Avoid sudden movements and do not walk around the room while talking. Do not speak from a distance; approach them without invading their personal space.
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Convey trust and security through touch: hold and gently stroke their hands, place an arm around their shoulders, etc.
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Allow them to touch you to recognize you, and smile when you look at them.
In the advanced stages of Alzheimer’s disease, it is common for the patient to be uncooperative and to require assistance with activities of daily living, such as hygiene, dressing, mobility, feeding, etc. It is very important to remain patient and to avoid conveying a sense of hurry in the actions we perform.
Here are some hygiene and clothing recommendations that can be very useful in caring for these patients:
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Encourage them to maintain the daily habit of personal hygiene.
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Establish a routine by performing hygiene at the same time each day.
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Maintain as much privacy as possible, as lack of privacy can cause irritation or fear.
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For patients with mobility difficulties, it may be appropriate to install an assisted bathroom.
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Nail care: Make sure nails do not dig into the skin, cut them straight, and avoid injuries, especially in diabetic patients.
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Clean body openings: Pay attention to areas like ears, navel, etc., which the patient may forget.
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Focus on skin folds and mucous areas: Keep them clean and dry. If scratches or cracks occur, consult a nurse or doctor.
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Maintain oral hygiene: Keep the mouth clean and ensure dentures do not cause sores.
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Keep the skin moisturized: Apply moisturizing cream after bathing.
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Assist with hair care: Help the patient comb or style their hair.
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Shaving for men: Use electric razors to reduce the risk of cuts.
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Makeup for women: If the patient has always worn makeup, the caregiver can learn to apply a bit of blush and lipstick.
- Intenti que el pacient es vesteixi a la mateixa hora tots els dies com a part de la rutina diària.
- Utilitzar roba àmplia i còmode, fàcil de posar i de treure.
- Si no pot cordar-se els botons, substituir-los per velcros i elàstics a la cintura.
- Utilitzar sabates antilliscants i còmodes.
- És millor que el calçat no tingui cordons.
- Si té capacitat per escollir, evitar que tingui molta roba a l’armari.
- Ajudar al pacient a vestir-se col·locant la roba en l’ordre en què hauria de posar-se-la.
- Animar-lo perquè per si mateix es vesteixi fins on li sigui possible. Ajudar-lo si és necessari, sense presses i seguint el seu ritme.
- Si les precisa, donar-li instruccions clares.
Sleep problems associated with Alzheimer’s disease can be a major source of stress and fatigue for the caregiver. However, for the person with Alzheimer’s, nighttime can be difficult. Getting the person to go to bed and stay there may require some prior planning.
Here are some measures to promote sleep:
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Maintain a calm and peaceful tone at night to encourage sleep.
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Keep the lights very low.
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Eliminate loud noises, and even play relaxing music if the person seems to enjoy it.
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Try to keep bedtime roughly the same every night. Developing a bedtime routine can also help.
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Encourage the person to exercise during the day and, if possible, limit daytime naps.
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Restrict caffeine intake in the afternoon.
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If darkness frightens or disorients the person, use night lights in the bedroom, hallway, and bathroom.
Pressure ulcers are skin injuries with varying degrees of tissue involvement, ranging from small erosions to deeper lesions that can affect muscle, bone, and other structures. The cause of these lesions is prolonged pressure on the tissues. They mainly appear over bony prominences. The most common areas are the sacrum, heels, hips, skin folds, and bony protrusions in general.
Since most pressure ulcers can be prevented, the following preventive measures should be considered:
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Examine the condition of the skin at least once a day, paying special attention to bony prominences and areas exposed to moisture (from incontinence, perspiration, secretions, etc.), and check for any skin changes such as dryness, redness, or maceration.
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Keep the patient’s skin clean and dry at all times. Wash the skin with neutral soaps and dry it thoroughly without rubbing.
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Avoid excessive moisture on the skin: from incontinence, sweating, wound exudate, etc.
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Promote patient mobility by performing postural changes, especially if the patient is bedridden. This helps prevent prolonged pressure on the same areas.
In addition to all these measures, we must keep in mind that the appearance of skin problems can depend on other deficiencies in the body, such as poor nutritional status. It is very important to provide foods that are rich in calories, protein, vitamins (especially A, C, and B), and minerals (zinc, iron, and copper). It is also essential to maintain a good level of hydration, which can be achieved by offering fluids frequently.
Accidents are the leading cause of injury and disability and the fifth leading cause of death in people over 75 years old. Some symptoms of Alzheimer’s disease, such as mental confusion and memory loss, require modifications to the environment in which the person with dementia lives to prevent accidents that could harm them or others. It is not necessary to make drastic changes or lock away items considered unsafe. In fact, drastic changes can have a negative effect, making the patient feel more agitated and confused, to the point that their environment no longer feels familiar.
The kitchen can become one of the most dangerous places in the home. The following precautions can help reduce the risk of accidents. Make sure your kitchen equipment provides adequate safety guarantees. Precautions to take in the kitchen include:
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Replace a gas stove with an electric one; if this is not possible, install a safety device to detect gas leaks.
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Turn off the gas and unplug all small appliances before going to bed, every day, or if leaving the house for a long period.
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Do not use matches; use an electric lighter instead.
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Lock away sharp or dangerous objects such as scissors, knives, etc.
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Set the hot water temperature to a maximum of 37ºC (98.6ºF).
The bathroom can also be a dangerous place, so it is necessary to adapt it to the person’s needs. To prevent falls:
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Remove rugs, as they can cause dangerous slips.
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Place non-slip strips on the bottom of the bathtub or shower tray.
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Keep a permanent night light.
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Install grab bars to help enter and exit the bathtub safely.
To prevent the door from becoming locked:
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Remove the latch or eliminate the bathroom key to avoid the person with Alzheimer’s getting trapped inside.
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Install handles that ensure access in case of emergency.
To facilitate bathing or assist them with bathing:
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Use a flexible shower hose and install side bars in the shower and near the toilet.
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Ensure the toilet is at the correct height.
Acute confusional syndrome (ACS), also known as delirium, is a disturbance of mental status that is acute and reversible. Delirium is one of the most significant cognitive disorders in older adults. It is characterized by:
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Acute onset with fluctuations throughout the day, often worsening at night.
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Reversal of the sleep-wake cycle.
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Disorientation in time and space.
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Altered level of consciousness.
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Attention disturbances: inability to focus on external stimuli, easily distracted, and unable to follow instructions.
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Short-term memory impairment.
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Hallucinations, mainly visual, or misinterpretations that are often not remembered later. These worsen at night and can be vivid, causing fear and anxiety. Delusional ideas of persecution may occur (e.g., believing their food is being poisoned or that nursing staff want to harm them).
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Altered activity level: agitation, wandering, or restlessness alternating with drowsiness and lethargy.
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Language disturbances: vague, incoherent speech.
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Disorganized and distorted thinking: mixing past experiences with the present and distorting reality, alternating with periods of lucidity.
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Variable mood, frequently involving fear and anxiety.
Frequently, physical manifestations related to the underlying illness also appear (tachycardia, sweating, etc.). Partial syndromes are not uncommon; in fact, many times not all of these characteristics are present in the same patient, which makes diagnosis more difficult. Early diagnosis is very important, because with appropriate treatment most patients can recover satisfactorily, although advanced age and a longer duration of the illness worsen the prognosis.
Es distingeixen tres subtipus clínics del deliri:
- Hiperalerta, hiperactiu. Agitat. (Fàcil diagnòstic).
- Hipoalerta, hipoactiu. Inhibit. Es pot confondre amb demència.
- Mixt. És una combinació d’ambdues formes clíniques.
Acute confusional syndrome (ACS) can be caused by a wide range of factors acting at different levels; these can be predisposing factors or precipitating (triggering) factors.
Predisposing factors for acute confusional syndrome (ACS):
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Advanced age.
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Previous cognitive impairment.
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History of ACS or brain injury.
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Chronic alcohol or drug abuse.
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Psychosocial factors (depression, stress, lack of family support).
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Hospitalization-related factors, which are very significant, such as:
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Immobilization (e.g., post-surgical, post-traumatic).
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Sleep deprivation.
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Difficulty adapting to the hospital environment.
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Sensory deprivation, meaning a reduction of usual sensory stimuli (e.g., stay in the ICU).
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Primary brain disease: trauma, confusion, cerebral hemorrhage, neoplasms, post-seizure states, etc.
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Systemic illnesses affecting brain function secondarily: respiratory infections, lung diseases, cardiovascular diseases, metabolic disorders, anemia.
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Toxic exposures to exogenous substances: alcohol, drugs, or medications (sedatives or narcotics).
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Sudden deprivation in cases of chronic substance abuse.
Treatment: The treatment should be divided into three main aspects: prevention, specific treatment, and supportive care.
Prevention: Minimize or avoid the use of sedatives and narcotics, maintain good hydration and oxygenation, promptly treat any medical complications.
Tractament específic
El tractament etiològic (segons la causa) és el pilar del maneig de l’SCA. Es recomana tractar enèrgicament la malaltia de base. Moltes vegades el deliri no evoluciona de forma paral·lela a la patologia que el desencadena, sinó que tarda més en resoldre’s. Dins del possible s’ha d’eliminar la medicació, que pogués produir un deliri.
Tractament de suport
El tractament de suport inclou:
Assegurar una adequada alimentació i hidratació.
Dosificació d’estímuls ambientals: comptar amb un ambient adequat, el més tranquil possible i sense estímuls excessius.
Il·luminació adequada: habitació il·luminada i clara durant el dia i amb llum tènue durant la nit.
No és favorable ubicar a la mateixa sala a dos malalts amb deliri.
Mantenir un acompanyant permanent. La companyia de familiars és molt important.
Optimitzar la cura intensiva d’infermeria.
Atenció i visita de l’equip mèdic amb freqüència.
Tips for caregivers
Caring for caregivers
Here’s a number of useful ideas on “caring for caregivers” to maintain your quality of life to the extent possible:
Request information and training
Request information and suitable training regarding medical aspects of the disease: future progression, possible complications, medication, practical knowledge to deal with problems arising from nutrition, hygiene, adapting home environments, moving the patient, etc. All this will give you a feeling of control and efficiency.
Set actual and realistic targets
Set actual and realistic short-term targets when caring for a person with dementia. Do not have unrealistic expectations (e.g., thinking that this person won’t decline even further). Neither should you try to do everything yourself (e.g., “I’ll solve all the problems by myself”).
Stay motivated
Stay motivated. Take heart from your successes, congratulating yourself for a job well done. Don’t just focus on your own shortcomings and failures.
Self-care
Don’t forget about yourself and look after your own health. Try to take a few breaks, get enough sleep and eat healthy. Give yourself a well-deserved break every day or every week, away from direct contact with the person with dementia.
Avoid isolation
Avoid cutting yourself off from your usual social connections. Make an effort to stay in touch with friends, family and the people in your circle. Go out and about with other people; don’t stay cooped up. Connecting with others lowers stress.
Set boundaries
Learn to set boundaries when it comes to the patient’s unreasonable demands. Know when to say “no” without feeling guilty about it.
Plan
Plan your weekly and daily activities ahead. Set priorities for the tasks, differentiating between what’s urgent and what’s important. Decide which things you’re unlikely to get around to doing. Lack of time is one of the main causes for concern.
Independence
Encourage the patient’s independence. Let the person with dementia keep doing what they can do by themselves, even if they do so slowly or badly.
Make use of day care centers
Make use of day care centers, short-term respite care, or staff hired to provide in-home care or to do household chores, if the situation calls for it.
Frequently asked questions (FAQs)
- Dementia and Alzheimer’s disease
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- Risk situations and protective measures
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- AMBAR® Center
There is no single answer. Depending on the diagnosis, the type of disease and other factors such as age, overall health status, and intercurrent illnesses, the progression of dementia will vary from one individual case to another.
As dementia progresses, the person will experience a gradual decline in their abilities, which will affect their decision-making capacity and prevent them from managing or controlling their economic, financial or legal affairs. For this reason, it is important for the family, from the very moment of diagnosis, to reflect on this issue and seek solutions while the person with dementia still retains decision-making capacity. In this regard, it is advisable to consult a lawyer or a notary, who will be able to provide appropriate guidance according to the specific situation and needs involved.
They should not drive. It has been shown that the presence of cognitive impairment increases the risk of being involved in an accident, as safe driving requires the integrity of cognitive functions such as attention, planning, visual recognition and visuospatial ability. It has also been demonstrated that the progression of neurodegenerative diseases, such as Alzheimer’s disease, reduces the ability to detect imminent collisions, as a result of the combined decline in cognitive and visual capacities in affected individuals.
I recommend starting to use a diary on a daily basis as soon as possible. By developing the habit of carrying your diary, writing down everything you need to do and consulting it frequently each day, you will be better able to maintain your independence.
No. At present, there is no evidence-based scientific research demonstrating the therapeutic effectiveness of consoles or video games for people with Alzheimer’s disease. However, there is an interactive multimedia system, Smartbrain®, specifically designed to stimulate cognitive abilities, which has demonstrated therapeutic effectiveness by enhancing the effects of pharmacological treatment.
Yes, they are useful tools for improving attentional abilities, reasoning and calculation skills. They are ways of stimulating cognitive functions while having fun.
Memory impairment can be improved through cognitive reinforcement and stimulation during the learning and information retrieval phases. Recent studies suggest a clear beneficial effect of cognitive stimulation programmes on neuropsychological functions in the treatment of Alzheimer’s disease, helping to slow disease progression. Therefore, in order to achieve the greatest therapeutic benefit in patients with mild to moderate Alzheimer’s disease, the combined use of cognitive stimulation programmes and pharmacological treatment is recommended.
Not all patients with Alzheimer’s disease develop aggressive behaviour, although they do become somewhat more irritable and apathetic and, as a consequence, less tolerant and more rigid. Some individuals initially present with depression due to awareness of memory loss, which in most cases leads to a delay in diagnosis. The management of aggressiveness will depend on certain factors such as the person’s previous personality: if they were poorly tolerant of frustration, dominant or manipulative during adulthood, for example, these traits will be exacerbated by Alzheimer’s disease and will be more difficult to redirect. In response to reproach or insinuation from the caregiver, the person may react aggressively, usually verbally and occasionally physically. Another factor is limited understanding of the problem on the part of the family environment, which attempts to reason with the person with dementia about situations they are unable to understand. The situation is further aggravated if there was a previously difficult relationship. Finally, the development of a psychotic process (delusions and hallucinations) associated with Alzheimer’s disease may occur. In such cases, specific treatment must be introduced, as the situation generates distress both for the patient (who experiences it as real) and for the family, who are unable to manage it.
Alzheimer’s disease has a very low rate of familial inheritance. Only 1% of the different forms of Alzheimer’s disease are hereditary, and at least one parent and two or more first-degree family members must be affected. All of them share the same mutation and, if the mutation is known, diagnosis can be made even before symptoms appear in carriers of the familial mutation. In addition, the disease usually presents between the ages of 30 and 40.
Hereditary transmission should not be confused with genetics. Hereditary genetic mutations are determined from the moment of conception. Genetics, on the other hand, is shared among family members. Only certain risk genes determine whether Alzheimer’s disease will develop over the course of life, and these are responsible for the majority of sporadic cases. However, Alzheimer’s disease is genetic in nature. This means that there are risk genes in our DNA that, at a certain point in life and in combination with other environmental, toxic and lifestyle factors, may lead to the development of the disease, particularly after the age of 65.
Alzheimer’s disease is always progressive. Survival may range from a minimum of 2 years to a maximum of 20 years from diagnosis, with an average of between 10 and 12 years. Once the first symptoms appear, the disease progresses through three stages until death, unless another illness or accident becomes the cause of death earlier.
In the first stage (mild), symptoms appear as a functional loss affecting the more complex activities of daily living, known as instrumental activities. These include tasks that require mentally processing an idea or action, planning it and carrying it out. These are the activities that allow us to engage in social and professional life, acquire new knowledge and develop our intellectual potential through introspection, imagination and emotions. They are expressed through abstract thinking and the use of formal logic. This is the stage of formal operations, acquired from around the age of 12 onwards, and it is the first to be lost when the disease begins to manifest.
The second stage (moderate) begins when the simpler instrumental abilities of daily life start to break down, such as shopping, handling money, managing medication, maintaining adequate hygiene or following an appropriate diet, situations that enable survival and self-care. Loss of interaction with the environment begins, along with a growing inability to focus on more than one aspect of a stimulus. Pre-existing egocentrism appears or worsens, as does difficulty adapting to changes in routine. This stage marks the beginning of the loss of concrete operations, which are acquired between the ages of 7 and 12.
The third stage (severe) is characterised by the progressive loss of the most basic activities of daily living, such as eating, personal hygiene and urinary and faecal sphincter control. Affected individuals require assistance for basic care because they are no longer able to manage independently. They lose the ability to understand the information perceived through their senses and to interact with their surroundings. They are unable to manipulate objects and, once an object disappears from their field of vision, they cannot understand that it still exists. Sensorimotor capacity becomes disorganised; this capacity begins at birth and develops until around the age of 2. The loss of functional abilities follows the reverse order of their acquisition, and ultimately only emotional memory remains, the only link to their environment and the sole means of communication, expressed through gestures such as a smile, a hug or a kiss, but without understanding when, to whom or why.
It will depend on the stage of the disease and on how the person perceives their memory loss. In classical Alzheimer’s disease, memory impairment often prevents individuals from recalling recent information. At the beginning, being told about the diagnosis may be traumatic for them. However, they later forget what they have been told and may sometimes unconsciously deny reality, because they do not perceive themselves as unwell and may say: “I don’t know why they brought me here, nothing is wrong with me and I do everything perfectly.”
Another situation arises when the patient is aware of their condition and also presents significant depression as a result. In these cases, it is preferable to postpone communicating the diagnosis, after reaching agreement with the family, and to explain the problem in a less traumatic way (for example, “You have a memory problem that we are going to try to control”), avoiding the use of the so-called “magic” word that causes fear, and reframing the explanation in a positive manner. As the disease progresses, perception of one’s own “self” is lost and the previous distress disappears. Behavioural disturbances such as delusions or hallucinations, which can be highly distressing, may appear, but not due to awareness of the disease itself, rather as a result of the symptoms of the disease, which the person experiences as very real. In such cases, it becomes necessary to treat these symptoms in order to control the anxiety and fear they cause.
Alzheimer’s disease (AD) is the most common form of senile dementia. Dementia is a syndrome that involves a loss of independence in self-care, and Alzheimer’s disease is the type of dementia that most frequently affects people over the age of 65. When it occurs before the age of 65, it is referred to as presenile dementia due to Alzheimer’s disease.
In addition to Alzheimer’s disease, there are other types of dementia that present with different symptoms, such as dementia with Lewy bodies and frontotemporal dementia, which is more common in younger individuals. However, all forms of dementia require supervision and monitoring by others. The concept of “senile dementia” should therefore be abandoned, and the term dementia due to Alzheimer’s disease should be used instead.
If you would like to learn more about Alzheimer’s disease, our resources, diagnosis, or our care devices, you can find this information by browsing our website. If you would like to make an inquiry by phone, please call: Diagnosis Unit: (+34) 93.430.47.20 Day Care Unit: (+34) 93.444.10.24 Administration and management: (+34) 93.444.73.18 If you have any other questions, please fill out this form.
It is recommended to maintain and encourage activities and hobbies that the patient previously enjoyed and still enjoys. Try to avoid overstimulation if they already attend a center regularly.
Families are often advised to explain to the person with dementia that this is a recommendation from a healthcare professional to maintain and/or slow down the process of deterioration. It is also advisable to try to agree on a temporary compromise with them (until the next medical assessment).
People with dementia go from being totally independent to needing 24-hour supervision. If a gradual transition is possible, it will be easier for them to get used to living with someone else. At first, they may only need someone to manage their medication, help them with shopping or eating, and may not require constant supervision. There are some questions that can help decide the type of care a person with dementia needs: Do they continue to take care of their personal hygiene and appearance? Do they take their medication properly? Do they eat properly? Do they keep the house tidy? Do they turn off the stove? Do they turn off the gas? Do they burn their food? Do they act on unfounded ideas or suspicions? Do they show good judgment in their decisions and actions?
The process of dementia is a changing reality, dependent on the disease itself, in which the needs of the person with dementia and their family will change as the disease progresses and introduces more elements of dependency in the sick person. The question “When is the right time to enter a day center or nursing home?” is not the question we should be asking ourselves. The questions a caregiver should ask themselves are: Is my family member being well cared for? Do they need any kind of care that we cannot provide at home? The answers to these questions should guide us in using the most appropriate resources. Caring for a person with dementia is a long-term commitment, so the caregiver must be aware of the quality of care they are providing and the need for help or rest in order to continue performing this task competently. The decision to go to a day center or move into a nursing home can bring up conflicting feelings (Will they want to go? What if they don’t want to? Am I doing the right thing?), but we must always remember that the goal is to provide the person with dementia with the highest quality of healthcare and environment they need, which may no longer be possible at home.
Currently, assistance is accessed through the assessment of the Dependency Law. This assessment grants the applicant certain rights to services, in accordance with the degree of dependency that has been recognized. Thus, in order to access assistance, the person must be considered dependent under the terms described in the Law. To do so, they must request the initiation of the dependency assessment procedure at the Social Welfare office in their area.
No. The beneficiary contributes to the financing of the service according to their personal financial capacity. Financial capacity is determined based on the applicant’s degree of dependency, income, and assets. The cost of the service is the same, regardless of whether the beneficiary occupies a subsidized place in a collaborating center or a public center.
The different autonomous communities, welfare and social entities provide people with dementia and their families with a range of services and resources designed to meet the various needs that may arise when caring for a person with dementia. These include: home care, telecare, day centers and hospitals, and nursing homes. Home care The home care service aims to provide personal support, care, and assistance to people who lack personal autonomy. The most notable services are those related to domestic or household needs: cleaning, laundry, cooking, and others; and services related to personal care, in carrying out activities of daily living (personal hygiene, help with dressing and eating, etc.). This service can be accessed privately or through subsidies. When the service is subsidized by the government, its duration varies depending on the social and family situation, the needs of the dependent person, and the intensity of the service required by the person according to their degree and level of dependency and the compatible services prescribed. Telecare This is a technical resource for home supervision via telephone that acts preventively 24 hours a day.Home telecare, although its installation is contraindicated for people with dementia who live alone, is often very helpful for family members who live with the person with dementia in case they need to call for help. Hospitals and therapeutic day centers These are day care centers whose specific objectives include rehabilitation of deficits and cognitive stimulation. They carry out cognitive, motor, and psycho-affective psychostimulation activities. They also focus on maintaining activities of daily living and re-educating skills. Their specific objectives are: to rehabilitate and restore deficits; to stimulate, delaying the progressive loss of abilities; to optimize residual functional abilities; and to alleviate, replacing needs. Assisted day centers and hospitals Assisted day centers and hospitals offer supervision and assistance with activities of daily living, while complementing the care provided by the family environment. The objectives of these facilities include: providing an environment that is suitable and adapted to the needs of people with impairment; promoting the maintenance of people’s autonomy; and providing support to families in caring for their relative with dementia. Assisted living facilities are residential care services, either permanent or temporary, that provide comprehensive assistance with daily living activities for people with dementia. Access can be private or subsidized.
Contact the person in charge of the centre at the telephone number 610 59 59 43 (América Morera). Through an interview with the deputy management team, the needs of the user and their family will be assessed, and they will be guided towards the most appropriate resource.
At Ace Alzheimer Center Barcelona, we offer the possibility of receiving telephone assistance from a medical professional from 2:30 p.m. to 3:00 p.m., Monday through Friday, by calling 93 430 47 20.
The Ace Alzheimer Center Barcelona Diagnostic Unit is located at Gran Vía de Carles III 85 bis (Barcelona). To get there by bus, take lines V3, H6, 7, 33, 59, 63, 67, 70, 75, 78, L12, L14, L79, N12, 518, or 850.
You will need: your ID card, a list of your current medications, a cranial CT scan or MRI, and recent blood tests including a complete blood count, biochemistry, vitamin B12, TSH, folic acid, syphilis serology, and HIV. In addition, if you are visiting under the Social Security system, you must present your referral request and health card.
You can arrange a visit by calling 93 430 47 20 or sending an email to recepcio@fundacioace.org.
Once your primary care physician has evaluated you and requested a referral to the Ace Alzheimer Center Barcelona Diagnostic Unit, you must send the referral request by fax to 93 419 35 42 or by email to recepcio@fundacioace.org. We will contact you to arrange an appointment and provide you with the necessary information for your first visit.
Your primary care physician, a neurologist, a psychiatrist, a neuropsychiatrist, or a social worker.
“Occupational Therapy is the therapeutic use of self-care, work and play activities to increase independent functioning, enhance development and prevent disability. It may include adapting tasks and the environment to achieve maximum independence and improve quality of life” (American Occupational Therapy Association (AOTA), 1986).
Occupational therapy uses activity with the aim of preventing or delaying functional decline in the person, using techniques such as facilitation, grading, functional analysis, and training in assistive devices or environmental adaptations. The role of the occupational therapist in a cognitive psychostimulation day centre, particularly in Ace Alzheimer Center Barcelona centres, focuses on the application and implementation of occupational techniques, as well as on the orientation and stimulation of altered physical and/or psychological functions. Specifically, the occupational therapist conducts cognitive stimulation workshops, praxis workshops (for people with diverse symptom profiles, focusing on the areas in which they present impairments or providing compensation by adapting the activity, grading its difficulty or offering assistance), and participates in the development of new exercises.
After becoming familiar with the individual user, the occupational therapist collaborates in the development of the intervention plan through the programming of activities based on the person’s needs, preferences and interests. Likewise, they inform the professional responsible for family care about the assistive devices and environmental adaptations that should be considered in the person’s care. In addition to providing direct care, the occupational therapist also carries out teaching activities, both for centre staff and through the Ace Alzheimer Center Barcelona website. In the latter case, they provide guidance on caring for people with cognitive impairment at home, whether in activities of daily living and instrumental activities, leisure activities, or environmental adaptations.
10:00 a.m.-11:00 a.m.: Welcome and breakfast. Entertainment. 11:00 a.m.-12:30 p.m.: Cognitive stimulation workshop (structured sessions, in different homogeneous working groups depending on cognitive level). 12:30 p.m.-1:00 p.m.: Maintenance of basic activities of daily living. 1:00 p.m.-2:00 p.m.: Motor stimulation workshop – praxias (different groups). 2:00 p.m.-3:30 p.m.: Lunch and after-lunch conversation. 3:30 p.m.-4:15 p.m.: Maintenance of basic activities of daily living. 4:15 p.m.-5:30 p.m.: Occupational workshop (different groups and activities). 5:30 p.m.-6:00 p.m.: Farewell. There are also small group physical therapy sessions during the day.
The Ace Alzheimer Center Barcelona implements the PPI using an interdisciplinary approach capable of meeting the needs of people with dementia and their families at different stages of the disease, offering continuous therapeutic care in cognitive, physical, functional, psychological, and social aspects. The set of techniques used (cognitive psychostimulation, psychoexpression workshop, physical therapy, occupational workshop, maintenance of basic activities of daily living, and kinesitherapy) are interspersed so that the person is active, alert, and stimulated throughout the day, following a pre-established schedule and a familiar routine. This allows the morning to be used for more therapeutic activities that require greater attention, such as cognitive psychostimulation workshops. In contrast, the afternoon activities are more recreational and occupational.
The PPI is a therapeutic strategy based on the presence of neural plasticity and grounded in cognitive neuropsychology, behavior modification therapy, and the bio-psycho-social state of the individual. The purpose of the therapy is to improve and/or slow down the clinical evolutionary process in the short and medium term (Boada and Tárraga, 1990). This program basically consists of integrating different techniques to improve aspects of behavior and personality. The application of rehabilitation techniques mainly affects four aspects of the person with dementia: cognitive, motor, psychosocial, and activities of daily living. Taken as a whole, it is considered a comprehensive intervention.
Incapacity is a judicial act that modifies a person’s legal status by placing them under a protection regime. What gives rise to incapacity is not the illness or impairment itself, but the inability to govern oneself. Incapacity seeks to compensate for the shortcomings of those who, lacking sufficient capacity to function independently, require a person to represent them or to supplement their legal capacity. In this way, incapacity empowers the incapacitated person. The incapacity procedure is requested before a judge and may be initiated by a close family member. If there are no close relatives, anyone who is aware of the situation may report it to the Public Prosecutor’s Office, which will then initiate the process.
It is a document in which a person sets out the wishes and instructions regarding the healthcare and social care they wish to have respected if they find themselves in a situation where, due to different circumstances arising from their physical and/or mental condition, they are unable to express them personally. The advance directives document helps family members as well as healthcare professionals to determine the most appropriate decisions for a person in situations in which they are unable to express their wishes.
The document may be formalised before a notary or in writing before three witnesses. In the latter case, the witnesses must be adults with full legal capacity, at least two of whom must have no marital or de facto partnership relationship with the person, no kinship up to the second degree of consanguinity or affinity, and no patrimonial relationship.
In order to grant powers of attorney, establish self-guardianship or draw up advance directives, the notary requires that the person meets the necessary requirements of intent and awareness at the time the powers are granted. For this reason, in most cases, these documents can only be executed during the early stages of cognitive impairment.
Any person who meets the required conditions of intent and awareness at the time it is established may appoint, before a notary, a person to act as their guardian in the event that they are declared legally incapacitated. The person may also exclude certain individuals from these functions, appoint substitutes, and set out how they wish to be cared for and how their assets should be managed.
Self-guardianship is a form of guardianship that currently exists only in Catalonia and must be formalised before a notary.
A power of attorney consists of a person with cognitive impairment granting authority to one or more individuals to manage or dispose of specific assets or rights. It is a way of protecting the person from an economic and financial perspective.
As cognitive impairment progresses and evolves, the person gradually loses the ability to carry out certain activities, to understand the nature and consequences of their actions, and to grasp the value of money. However, from a legal standpoint, a person with dementia continues to have full legal capacity. This situation may pose a serious problem both for the person themselves and for those close to them.
There are different legal instruments available to protect people with cognitive impairment or dementia. The most appropriate option will be the one that provides the level of protection they need, bearing in mind that a balance must always be sought between their safety and their freedom.
If you’re interested in participating in a clinical trial, you first need to find out whether you meet the eligibility requirements and whether it’s right for you. Keep in mind that each trial has its own rules regarding who can participate (for example, some are aimed at early stages of the disease and others at more advanced stages depending on the drug’s mechanism of action).
Additionally, consult your doctor to determine if a particular clinical trial is right for you. If you meet the inclusion criteria, they will explain all the details of the clinical study to you, such as the study’s duration, number of visits, a description of the procedures, as well as the risks, benefits, and requirements for participation. Once you have started participating in a trial, you are free to withdraw at any time.
You will then be asked to sign an informed consent form to document that you understand what the trial entails, that any questions have been answered, and that you are willing to participate.
No. Medical care related to the clinical trial includes consultations, treatments, and study procedures. In addition, transportation expenses and other costs incurred during visits to the center are covered.
The duration and number of visits for each trial vary depending on the study’s objective. Some last a few months and others several years. If you participate in a clinical study, you can withdraw at any time.
Participants will have the opportunity to access new treatments and innovative diagnostic techniques currently unavailable to the general population, which could help manage the progression of the disease and improve quality of life. They will receive more comprehensive and personalized medical monitoring with more frequent check-ups. In addition, participating in a clinical trial will help others with the same condition in the future by providing valuable data on treatment advances and on Alzheimer’s disease.
Drugs must go through different stages before being approved. First, they are evaluated in in vitro (laboratory) and preclinical (i.e., animal) models to determine whether these molecules are safe and whether they impact the pathological processes described in the disease. For example, in the case of Alzheimer’s disease, the investigational products are evaluated for their ability to prevent the accumulation of amyloid plaques in the brain or to improve animals’ memory. In this way, drugs in clinical development in humans go through Phase 1, 2, and 3 clinical trials, where each time a larger number of subjects are exposed. In Phase 1 clinical trials, a small number of people (usually fewer than 100) are exposed; the drug’s concentration in the blood is studied, its adverse effects are assessed, and different doses are evaluated. Next, in Phase 2 trials, a larger number of participants (typically between 100 and 400) are exposed to the drug, different doses are evaluated, and its safety continues to be studied.At this stage, the drug’s impact on various disease indicators is already being evaluated. Finally, in Phase 3 clinical trials, we will evaluate its clinical efficacy and continue to study its safety. All clinical trials involving a drug must be approved by the strict standards of the Spanish Agency for Medicines and Health Products (AEMPS), an entity that evaluates the proper conduct of these studies, reviews the correct production of the investigational product, ensures that the benefit/risk of the proposed clinical trial is coherent, that the professionals participating in the clinical trial are adequately qualified, and that the people who decide to participate are treated with the highest possible safety. They must also be approved by an ethics committee. Before participating in a clinical trial, a comprehensive examination is conducted to minimize risks during participation. The results of all tests must fall within normal ranges; otherwise, the person cannot participate. All of this does not preclude potential risks from arising during their participation in the study. In this regard, all participants must sign an informed consent form in which the participant explicitly acknowledges their understanding of the risks and benefits involved in participating in a study.
Clinical trials are studies designed to understand the effects of a drug or investigational procedure. To participate in one of these trials, certain procedures must be carried out, which will depend on each research protocol.
In clinical trials for diseases involving cognitive impairment, it is almost always necessary to involve a close personal caregiver (a family member or close friend) who is asked questions to objectively assess the progression of the disease. The patient and their companion will be required to attend the study visits and must inform the trial doctor of any changes in their life that they believe could impact the study’s results (changes in medication, scheduling of surgeries, etc.) or any possible side effects that may arise.
Participation in a research study is free and voluntary. All information collected during the study will be treated confidentially. More about clinical trials
Ambar® has two phases. It begins with an intensive phase lasting six weeks, followed by a maintenance phase, the duration of which will be determined by medical criteria. Follow-up visits with the neurologist are scheduled every three months.
Before the procedure, the person will have a blood test to check that they are suitable for the session. During the procedure, the person will lie comfortably in a reclining chair and a specialized healthcare professional will connect them to the plasma replacement device via a vein in their arm. They will be under constant medical supervision throughout the procedure. All medical equipment that comes into contact with blood is disposable and sterile. A member of the Therapeutic Apheresis Unit team will follow up with the patient 24 hours later.
Anyone wishing to undergo the procedure must attend an informative consultation with the neurologist and undergo additional tests if requested by the professional. If suitability for the procedure is confirmed, the first phase of AMBAR® begins.
Plasma therapeutic replacement is a very safe procedure for everyone, and after the treatment protocol, you will be able to resume your normal daily activities. As a precaution, you should only limit intense physical activity for 24 hours after the procedure. In addition, a member of the Unit team will monitor your condition during the following day.
Albumin is the most abundant protein in plasma and, among other functions, serves to transport substances through the bloodstream. It also transports beta-amyloid protein, which accumulates in the brains of people with Alzheimer’s disease, forming plaques that destroy neurons. Therefore, if we periodically extract this plasma, we could eliminate beta-amyloid, limiting the impact of Alzheimer’s disease on a person’s cognitive functions.
Plasma exchange is a medical procedure that has been used for decades in the treatment of multiple neurological diseases and other conditions, such as kidney disease and Crohn’s disease. It involves extracting blood from the patient using a medical device that separates the different components: plasma (the liquid part of blood) and blood cells (red blood cells, white blood cells, and platelets). The extracted plasma is replaced with albumin, which is administered to the patient along with the blood cells.
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