Advice for the caregiver

Professional caregivers are very familiar with the difficulties involved in caring for patients with dementia, so they are able to help families learn to be carers, to understand the most important aspects in preserving health, and not to fall into the common situations of over-protection or exhaustion.

Below are a series of useful suggestions to “care for the carer”, to prevent their quality of life from deteriorating.

It is very important for the patient’s carer to know how to acknowledge that they need help, and to know that rather than distracting them from their work as a carer, it will make them more effective.

They need to accept that feeling exhausted is common and even to be expected in carers. These reactions to “extreme” situations are normal; however, they do require support. If carers detect these signs/reactions, they should not conceal them because they don’t want people to think they are “at the end of their tether” or because they are scared of not excelling as a carer.

Ask family members for help
To avoid situations of stress which are harmful both for the carer and the person with dementia, it is essential to be able to delegate tasks and divide responsibilities between family members when the carer can not manage everything.

Ask for social or external help
Do not be afraid to see a professional (psychiatrist or psychologist) or self-help groups at associations for people affected by Alzheimer’s disease. They can be very effective.

Ask for information and adequate training regarding the medical aspects of the disease: future progress, potential complications, medication, practical ideas for facing the problems arising from nutrition, hygiene, home adaptation, patient mobilization... This will promote the feeling of control and personal effectiveness.

Set real and feasible short-term objectives in the patient’s caregiving tasks. Don’t make unrealistic expectations (for example, by thinking that the patient is not going to get any worse than he is right now). Don’t think that you are omnipotent either (for example, “I am going to take care of the problems by myself”).

Stay motivated. Reinforce yourself in the success, congratulating yourself for all the good you are doing. Do not pay attention only to the shortcomings and faults you may have.

Do not forget about yourself and looking after your own health. Try to have spaces for rest, sleep the sufficient number of hours and maintain a proper diet. Allow yourself a deserved rest every day or week, away from direct contact with the person with dementia.

Avoid isolating yourself from your regular social interactions. Make yourself stay in touch with friends, relatives and the people around you. Get out of the house with other people; do not stay shut inside. Warm emotional connections reduce stress.

Know how to put a limit on the excessive demands of the patient: you have to know how to say “no” without feeling guilty.

Plan activities for the day and week. Prioritise tasks, differentiating what is urgent from what is important. Decide what things you probably will not be able to do. The lack of time is one of the main causes of worry.

Support the patient’s independence. Allow the person with dementia to continue activities that they can do for themselves, even if they do them slowly or badly.

Make use of day centres, short-term residences or homecare and household staff if the situation calls for it.

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Nutrition and ageing

Ageing brings with it a range of changes in people, which can be summarised as follows:

  • Changes in weight and size.

  • Tooth and gum disease, deficient teeth.

  • Sensory alterations such as atrophy of the olfactory bulb or reduced salivation, sense of taste and sensitivity of the thirst centre.

  • Changes in body composition.

  • Changes in immune response.

  • Tendency for constipation due to changes to the gastrointestinal tract or low fluid intake, for instance.

  • Coexistence of physical and mental illnesses, which increase or reduce nutritional requirements; moreover, they can limit the ability to obtain proper nutrition.

  • Physical frailty.

  • Changes in spending power.

  • Social isolation.


All of the above, in addition to the cognitive incapacity resulting from Alzheimer’s disease itself, will mean a series of eating disorders in our patients, the most common repercussions of which are: undernutrition or malnutrition.


Undernutrition and malnutrition 

Undernutrition is the presence of an imbalance between what is consumed and what is needed; it is determined by the quality and quantity of nutrients and how the body uses them to maintain an optimal functional state. There are multiple consequences; the following should be highlighted:

  • Changes to the immune system and a consequent increase in the risk of infection.

  • Bedsores.

  • Poor healing of wounds.

  • Immobility.

  • Acute confusional states.

  • Hospital admittance and increased length of hospital stays.

Activities to be carried out

  • Provide individualised nutritional treatment.

  • Create highly nutritious diets with small portions.

  • Keep to regular routines.

  • Enrich dishes with egg, oils, cream or egg yolks, for instance.

  • Take special care over how dishes are presented.

  • Consider the use of nutritional supplements.

General advice

  • Keep to regular routines.

  • Prepare regular, highly nutritious, small meals.

  • Consume foods rich in proteins like meat, fish, eggs and legumes.

  • Eat slowly in small quantities and if necessary change the texture of foods (creamed or puréed, for example). Avoid broth and very thin soups.

  • Include the maximum variation of foods to prevent nutritional deficiencies.

  • Whenever possible, do physical exercise (remember that the best exercise is walking).

  • It is very important to drink between 1.5 and 2 liters of fluid per day, even though there is no feeling of being thirsty.

  • In case of constipation: it is helpful to take 2 or 3 prunes in fasting state or a fiber supplement before breakfast.

  • If the patient gets choked often when drinking water, administer thick beverages. Juices may be thickened with thickening agents: prepare soups as puree, replace milk with yogurt, custards or puddings. It may be convenient to give gelatin, which is a way of administering water in a solid form.

  • If they have constipation, it is useful to eat two or three plums on an empty stomach before breakfast, or to take a fibre supplement.

  • Maintain good oral hygiene.

  • Follow the doctor’s recommendations.

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Agressive reactions

A person suffering from dementia can react aggressively to things that, for healthy people, are unobjectionable. They perceive threat or danger where none exists. These aggressive reactions are problematic and difficult to resolve both for the primary carer and for family members due to the apparent lack of understanding on the part of those who care for them.

What can cause an aggressive reaction?

It may be the patient’s emotional response to feeling rejected or to being unable to properly perform an activity. It may also be caused by anxiety, fear or frustration if:

  • They do not understand their present situation

  • They do not remember how to do things

  • They are not able to express their feelings

  • They do not recognise the people around them

What can be done?

Look for the cause. These types of reactions are the ill person’s way of expressing their fear or distress when confronted with an event or movement that they are not able to understand correctly. There is almost always a cause triggering their reaction. To find it is to be able to prevent it.


Tell the other people who take care of him or close friends
Report the problem to them to stop them from involuntarily triggering an aggressive reaction.
Prepare them so that they can deal with this situation if it occurs.
Explain the situation to children.
Talk to the doctor or professional carers about the problem if you are unable to control the situation.
Reassure the person with dementia
Explain what is happening: who the people around them are, what they are doing, where they are.
Use a calm voice, without becoming impatient.
Do not move away from them. Stay in their field of view.
Suggest an activity for them and give them enough time to do it, even if they do it incorrectly.



Adapt the environment
Remove the objects that may cause fear.
Improve lighting, avoiding dark places.
Always stay calm
Try to control the situation as effectively as possible.


What you should not do

  • Do not try to reason using your logic.

  • Do not take their behaviour personally.

  • Do not cry.

  • Do not tell them off.

  • Do not give exterior form to your fears.

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Incontinence, defined as the loss of control over the bladder and/or colon, is a common problem among people with Alzheimer’s disease and other types of dementia, especially in the latter stages of the disease.

Urinary incontinence is one of the most distressing health problems that a person can experience. Those who experience it often feel discomforts and embarrassment. This disease affects areas of daily life as basic as resting, carrying out a work activity and hobbies. Therefore, the consequences may not only be physical (skin lesions and hygiene problems) but may also affect the patient psychologically, who shows a tendency towards isolation and depression.

Urinary incontinence is one of the most distressing health problems a person can have. People who frequently suffer from it feel annoyance and shame. This illness affects such fundamental aspects of life as rest, the performance of work activities and leisure activities. As a result, the consequences may not only be physical (cutaneous lesions and hygiene problems), but can also psychologically affect patients, who have a tendency towards isolation and depression.

Incontinence can be controlled by changing the patient’s routine, clothing or environment. However, at a certain point, incontinence must be accepted as a permanent condition of ageing. It is very important to identify the different types of urinary incontinence in order to apply the most appropriate care plan and the correct individualised treatment.

We know today that urinary incontinence is not an irreversible process and can in many cases be treated with physiotherapy, re-education of the patient’s habits, with drugs or with surgery. However, when this is not possible, patients may resort to palliative treatment.

The prevalence of urinary incontinence increases with age, and is most frequent in women.

Types of urinary incontinence

Stress urinary incontinence

The involuntary release of urine caused by physical effort (physical activity, coughing, laughing, sneezing, etc.). It mainly affects women in their middle age.

Urge urinary incontinence

The involuntary release of urine associated with a strong urge to urinate, caused by an involuntary contraction of the detrusor muscle. It affects both sexes equally, especially in old age.

Mixed urinary incontinence

The combination of the two types of incontinence, stress and urge.

Overflow urinary incontinence

Urine is released in drops, without the patient perceiving the desire to urinate. This type of incontinence is secondary to urinary retention. It can be caused by an obstruction or by brain injury.

Functional urinary incontinence

Associated to mental illnesses like Alzheimer’s, Parkinson’s and depression. Although the urinary system functions normally, the ill person is unable to control urination.

Causes of incontinence

If somebody with Alzheimer’s has begun to lose control of their bladder or colon, the first, most important step is to identify the possible causes. The following must be considered:


Medical conditions
Urinary infections, constipation, or a prostate problem.
Diabetes, cerebral stokes, or a muscle disorder such as Parkinson’s disease.
Or a physical disability that makes it more difficult for the person to go the bathroom.


Medications and diuretics
Tranquilizers/sedatives or sleeping medication can relax bladder muscles.
And beverages such as coffee, soft drinks and tea could contribute to incontinence as they have a diuretic effect, since they increase the need to urinate.



Steps to follow

Environment and clothing

  • Make sure that the person can find the bathroom.

  • Avoid obstacles in his path towards the bathroom and make sure the way is well lit.

  • Use simple and practical clothing for the person, easy to put on and take off.

  • Consider using a mattress protector or adult diapers.

  • Keep the sensitive areas of the skin clean by washing regularly and applying creams or powder.


  • It is important that the patient with Alzheimer continues drinking fluids so that he doesn’t dehydrate.

  • Dehydration can cause a urinary infection and give rise to incontinence.


  • Encourage the person to tell you when he needs to go to the bathroom.

  • Be alert for the slightest indications when the person needs to go to the bathroom. The person could be impatient, pace the floor, make faces or unusual noises, etc.).

Make plans ahead of time

  • Observe and acknowledge the person’s schedule and routine.

  • Try to set a schedule for using the bathroom. Example: first thing in the morning, every two hours during the day, immediately after eating and right before going to bed.
  • Identify when incidents occur and plan ahead.


  • Check if the person has urinated and/or had a bowel movement.

  • Help him to clean up and flush the toilet.

  • Keep the sensitive areas of the skin clean and dry by washing regularly and applying powder or creams.


  • Remember that these incidents are embarrassing.

  • Try to avoid blaming or scolding the person.

  • And when he is successful, congratulate him, encourage him and boost his confidence.

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Practical advice to improve communication

  • If the caregiver is nervous he should avoid talking to the patient. Try to relax.

  • If the patient is able to read, use simple lists: schedules for the day, medication, names, etc.

  • If the patient can’t read, replace the word with an image: photos and drawings that indicate how things work.

  • Speak with him often. Avoid isolation.

  • Don’t give information in advance. Give the message when you are ready to carry it out. For example, “we are going for a walk” when you are preparing to go out.

  • Don’t ask several questions at the same time: ask one question and wait for an answer. Repeat the question with the same words if you don’t receive an answer, and be patient.

  • Recuerde que el enfermo tiende a resumir los mensajes: identifique lo que quiere decir y dígaselo. Intente captar la idea cuando dice palabras sueltas.

  • Don’t force conversation if this is not possible. Avoid frustration.

  • Remember to identify yourself before starting a conversation; this will facilitate recognition for him. When you are with the patient, don’t use accessories that could confuse him: sunglasses, etc.

  • Avoid using pronouns. Always name the object or person that you are referring to. Don’t talk to him as if he were a child. You can show him affection by speaking to him normally.

  • Use subjects from the past to start conversations: his youth, his profession, etc.

  • Keep a sense of humor, without ridiculing. Downplay mistakes with jokes that he is able to understand.

  • Remember that you can ask him to do some activities by imitating him (combing your hair, washing your hands, etc.).

  • Don’t forget that sensory and physical problems in the elderly lead to isolation. Make sure that he always wears his hearing aid and glasses if needed and keep a check on his mouth: poorly adjusted dentures or sores could cause pain and reduce his attempts to talk.


The importance of body language

  • Keep eye contact during the conversation.

  • Stand or sit in front of him at the same level; you can sit beside him but in a way that he can see your face.

  • Avoid sudden movements and don’t walk around the room while talking. Don’t talk from far away; come close enough but without invading his personal space.

  • Transmit confidence and assurance in the way you touch him: hold his hand, put your arm around his shoulders, etc.

  • Let him touch you to recognize you and smile when he looks at you.

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Grooming and dressing

In the advanced stages of Alzheimer’s Disease the patient usually doesn’t cooperate and needs help in the activities of daily living, such as personal grooming, dressing, mobility, eating, etc.. It is very important that we be patient and to try not to transmit that we are rushed in the actions that we undertake.

Below, are some recommendations in personal grooming and dressing that can be very useful in the care of these patients.

  • Encourage him not to abandon the daily habit of personal grooming.
  • Establish a routine by carrying out his personal grooming at the same time every day.
  • Keep the maximum privacy possible, this could be a cause of irritation or fear.
  • In patients with ambulation problems it may be appropriate to install a handicap bathtub.

It is a good time to care for delicate areas:

  • Care of nails: to avoid in-grown nails, cut them straight, avoid sores particularly in diabetic patients.

  • Clean orifices (ears, navel, etc.) that the patient may forget.

  • Pay special attention to skin folds and mucous membranes that should be clean and dry. If there are any scratches or cracks, talk to the nurse or doctor.

  • Keep up oral hygiene: keep the mouth clean and check that the denatures are not causing sores.

  • Keep skin moisturized: apply moisturizing cream after bath.

  • Help him to comb his hair.

  • If the patient is male, help with shaving, use an electric razor as it is safer.

  • If the patient is a woman and has always had the habit of using makeup, the caregiver can learn to put on a little blush or lipstick on her.



  • Try to to get the patient to get dressed at the same time every day as part of the daily routine.

  • Use loose and comfortable clothing, easy to put on and take off.

  • If the patient can’t fasten the buttons, substitute them with velcro and elastic in the waist.

  • Use shoes that have non-slip soles and are comfortable.

  • It is better if the shoes don’t have laces.

  • If the patient have the ability to choose, avoid having a lot of clothes in the closet.

  • If the patient is able to choose, avoid having too much clothing in the closet.

  • Encourage him to dress himself to the extent possible. Help him if necessary, without rushing and following his rhythm.

  • If needed, give the patient clear, step-by-step instructions for getting dressed.

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Promote sleep


Sleep problems associated with Alzheimer’s disease can be a major source of stress and fatigue for the person caring for the patient. But for the person who has Alzheimer’s disease, the nighttime hours can be difficult. Getting the patient to go to bed and stay there may require some planning beforehand.

Some measures to promote sleep could be:

  • Keep a soothing and peaceful tone at night to induce sleep.

  • Keep the lights dim.

  • Eliminate loud noises, and play relaxing music if the patient seems to enjoy it.

  • Try to keep bedtime around the same time every night. Developing a bedtime routine may also help.

  • Encourage the person to exercise during the day and limit daytime napping, if possible.

  • Limit caffeine intake during the afternoon.

  • If the person is afraid of the dark or it disorients him, use night lights in the room, hall and bathroom.

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Pressure ulcers


Pressure ulcers are lesions on the skin with different degrees of tissue involvement, from small erosions to deeper lesions that can affect muscle, bone… The cause of these lesions is the pressing of tissues caused by pressure maintained over time. They mainly appear in bony areas. The most common areas are: sacrum, heels, hips, skin folds and bony areas in general.

Since most pressure ulcers can be prevented, we should take into account the following preventive measures:

  • Examine the condition of the skin at least once a day, paying attention particularly to bony areas, areas exposed to moisture (due to incontinence, perspiration, secretions…), checking for skin alterations such as dryness, redness, maceration.

  • Keep the patient’s skin clean and dry at all times. Wash the skin with neutral soap and carefully dry it without friction.

  • Avoid excess moisture in the skin: incontinence, sweating, exudate from wounds, etc.

  • Promote patient’s mobilization by changing posture if he is bedridden. By doing so, we will avoid pressure on the same areas by decreasing the time there is pressure on any given area.

In addition to all these measures we must take into account that the onset of skin problems can depend on others deficiencies in the human body such as malnutrition. It is very important to provide foods that are rich in caloric content, proteins, vitamins (particularly A, C and B) and minerals (zinc, iron and copper). It is also fundamental to maintain a good level of hydration, which can be obtained by frequent intake of fluids.

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Accident prevention


Accidents are the leading cause of injuries and disabilities and the fifth cause of mortality in people over 75 years of age. Some symptoms of Alzheimer’s disease, such as mental confusion and memory loss, require changes in the environment where the person with dementia lives to prevent accidents from affecting him or others.
Big changes or storing unsafe things under lock and key is not necessary. In fact, drastic changes may have an adverse effect and make the person with dementia feel even more altered and confused, even to the point that the environment is no longer familiar to him.



The kitchen can become one of the most dangerous places in the house. The following precautions can lower the risk of accidents. Make sure that your kitchen equipment offers sufficient safety guarantees. Some precautions that should be taken in the kitchen are the following:

  • Replace a gas oven for an electric range, if you cannot, install a safety device to detect gas leaks.

  • Turn off the gas and disconnect all small home appliances before going to bed, every night or if you are going to be gone for a long period of time.

  • Don’t use matches, use an electric lighter instead.

  • Keep sharp or dangerous objects such as scissors, knives, etc., under lock and key.

  • Regulate the hot water to a maximum temperature of 37ºC.


The bathroom may also be a dangerous place and it will be necessary to adapt it to the patient’s needs.

To prevent falls

  • Remove all rugs since they could cause a dangerous fall.

  • Place anti-slip strips in the bottom of the bathtub or shower.

  • Keep a nightlight on at all times.

  • Install handrails to aid getting in and out of the bathtub.

To keep the door from locking

  • Remove the lock from the door or eliminate the bathroom key to keep the person with Alzheimer’s disease from getting locked inside.

  • Use knobs that ensure access in case of emergency.

Facilitate the act of bathing or giving a bath

  • Flexible hand shower, side rails in the shower and beside the toilet.

  • Toilet at the appropriate height.

Prevent other accidents

  • Keep the first aid kit and the bath products out of reach.

  • Keep cleaning products out of reach or under lock and key.
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Acute confusional syndrome

Acute confusional syndrome (ACS), also called “delirium”, is an alteration in the mental state that is acute and reversible in nature. Delirium is one of the most important cognitive disorders in the older adult. ACS is characterized by:

  • Acute onset, with fluctuations throughout the day and often worsening during the night.

  • Inversion in sleep-wake rhythm.

  • Disorientation in time and space.

  • Alteration in the level of consciousness.

  • Alteration in attention: unable to maintain attention to an outside stimulus. Easily distracted, does not follow commands.

  • Short-term memory impairment.

  • Hallucinations (mainly visual), or misinterpretations, which are usually not remembered afterwards. They become worse at night and are lived with fear and distress. Delusional persecution ideas (they believe that their food is poisoned, or that the nursing staff wants to harm them).

  • Activity level alteration: agitation, wandering or restlessness that alternate with somnolence and lethargy.

  • Language alterations: vague, incoherent.

  • Disorganized and distorted thinking. They mix experiences from the past with the present and distort reality. They alternate periods of lucidity.

  • Mood swings, there is often fear and anxiety.

There are also the inherent physical manifestations of the underlying triggering illness (tachycardia, sweating, etc.). Partial syndromes are not uncommon; in fact many times all of these characteristics are not present in a single patient, which make diagnosis more difficult.

Early diagnosis is very important because satisfactory recovery is possible with an appropriate treatment in most patients, although advanced age and the duration of the disease darken the prognosis.


There are three clinical subtypes of delirium:

  • Hyperalert, hyperactive. Agitated.(Easy to diagnose).

  • Hypoalert, hypoactive. Inhibited. Can be confused with dementia.

  • Mixed. This is a combination of both clinical forms.


Acute confusional syndrome can be caused by an entire series of factors that work at different levels; and can be predisposing factors or triggering factors.

Predisposing factors

  • Advanced age

  • Previous cognitive impairment.

  • History of ACS or brain damage.

  • Chronic alcohol or drug abuse.

  • Psychosocial factors (depression, stress, lack of family support).

  • Factors relating to hospitalization, this being a very important factor; such as immobilization (e.g., postsurgical, postraumatic), sleep deprivation, lack of adaptation to the hospital environment, sensory deprivation understood as a reduction in regular sensory stimuli  (e.g., stay in ICU), etc.

Triggering factors

  • Primary brain disease: traumas/contusion, cerebral hemorrhage, neoplasms, after an epileptic seizure, etc.

  • Systemic disease secondarily affecting brain functions: respiratory infection, lung disease, cardiovascular diseases, metabolic disorders, anemia.

  • Intoxication with exogenous substances: alcohol, drugs or medications (sedatives or narcotics)

  • Sudden deprivation in the case of toxic substance abuse.


Treatment must be divided into three main aspects: prevention, specific treatment and support treatment.


The use of sedatives and narcotics must be minimized or avoided, maintain good hydration and oxygenation, and treat any medical complication early.

Specific treatment

Etiological treatment (according to the cause) is the pillar of ACS management. It is recommended that the underlying disease be treated rigorously. Many times delirium does not progress in parallel with the condition that triggered it, and therefore it takes longer to resolve. Medication that could cause delirium should be eliminated to the extent possible.

Support treatment

Support treatment includes:
Ensuring adequate nutrition and hydration.
Monitoring environmental stimulus: provide an appropriate environment, as peaceful as possible and without excessive stimulus.
Adequate lighting: bright and clear room  during the day and dim light during the night.
It is not advisable for two patients with delirium to be in the same room.
Maintain a permanent companion. The company of relatives is very important.
Optimize the intensive care from the nursing staff.
Attention and frequent visits from the medical team.

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