Are you so committed to caregiving tasks that you’ve neglected your own physical, mental, and emotional well-being? The following questions may help you determine if you are putting your health at risk:
Do you visit your doctor annually?
The best thing you can do for the person with Alzheimer’s disease is to stay healthy. Respect what your body is telling you. Take exhaustion, stress, sleeplessness and changes in your appetite or behaviour seriously. Ignoring these symptoms can cause your physical and mental health to decline.
Do you accept assistance from others?
You can’t do everything. Attempting to handle everything yourself will only lead to burnout, depression and resentment toward the person you care for. You are not failing as a caregiver by asking others for help. When friends and family offer help, accept it. Also look into community resources that offer respite from caregiving responsibilities.
Do you talk to others about your feelings?
You may think that no one understands what you are going through. Holding in your feelings, however, will only make you feel isolated and emotionally neglected. Sharing your experiences with others may help you put things into perspective.
- There are six simple steps you can take to ensure that you are a healthy caregiver:
- See your doctor regularly.
- Get screened for stress and depression.
- Get plenty of rest.
- Eat well-balanced meals.
- Exercise regularly.
- Accept help from others.
More than 80 percent of Alzheimer’s caregivers report that they frequently experience high levels of stress, and nearly half say they suffer from depression. Many caregivers don’t recognise their needs, fail to do anything about them, or simply don’t know where to turn for help. Too much stress can be damaging to caregivers and the person with Alzheimer’s. Recognising the signs and learning how to reduce stress can help.
Warning signs of caregiver stress
- Social withdrawal
- Lack of concentration
- Health problems
If you are a caregiver who regularly experiences several of these stress symptoms, consult a doctor.
Ways to reduce caregiver stress
- Know what resources are available in your community
- Become educated about Alzheimer’s disease and caregiving techniques
- Get help from family, friends and community resources
- Take care of yourself by watching your diet, exercising, and getting plenty of rest
- Manage your level of stress by consulting a doctor and using relaxation techniques
- Accept changes as they occur
- Engage in legal and financial planning
- Be realistic about what you can do
- Give yourself credit for what you have accomplished; don’t feel guilty if you lose patience or can’t do everything on your own
Depression is four times more likely to strike those over age 65 than younger individuals. It is found in 20 percent of persons with Alzheimer’s disease, in up to 50 percent of Alzheimer’s caregivers, and in 15 percent of adults over age 65. Sadly, most people never get help for this treatable illness.
Symptoms of depression
The presence of at least four of the following symptoms over a two-week period may indicate depression:
- Depressed or irritable mood
- Feelings of worthlessness, self-reproach, or excessive guilt
- Suicidal thinking or attempts
- Motor retardation or agitation
- Disturbed sleep
- Fatigue and loss of energy
- Loss of interest or pleasure in usual activities
- Difficulty thinking or concentrating
- Changes in appetite and weight
Source: American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders
Indicators of depression in caregivers
Stress, anger, guilt, and grief related to caregiving can lead to depression.
Caregivers can experience grief at any point in the disease process. You should seek help if the grieving process is so prolonged that it affects both physical and mental well-being.
Treatment is available
If symptoms of depression are present, it is important for you to obtain a complete medical evaluation to rule out other causes. Medications or an unrecognised disorder may cause depression.
If there are no other underlying causes, consult a psychiatrist to obtain a diagnosis. Geriatric psychiatrists specialise in recognising and treating depression in older adults.
There is no one test to identify depression. The diagnosis involves assessment of medical history, possibly interviews with family members, and a mental status examination.
Treatment for depression can include some combination of medicine, therapy, psychosocial support and activities.
If you are a family caregiver, you can expect to experience feelings of loss, especially as your life and the person you love are changed by Alzheimer’s disease. The natural phases of grieving usually involve denial, anger, guilt, physical symptoms, and eventually acceptance. It is important to know, however, that everyone grieves differently.
Symptoms of grief
- Denial that your loved one is ill
- Periods of helplessness, despair and depression
- Changes in appetite or sleep patterns
- Feelings of anger or frustration with the person with Alzheimer’s and with caregiving tasks
- Withdrawal from social activities, friends, family and the person you care for
Throughout the process of grieving and mourning, guilt is often the most prevalent feeling for caregivers.
Guilt can be related to:
- Thinking you could have done something differently
- Being able to enjoy life while your loved one may not
- Feelings that you have failed, especially if your loved one has been placed in a nursing home
- Negative thoughts about the person with the disease — wishing that his or her suffering would come to an end
- Conflicts with family members because they are uninvolved or critical of the care that’s being provided
In many cases, feelings of guilt are linked to unrealistic expectations. To cope with the grieving process, try taking the following steps:
- Confront your feelings
- Accept guilt as a normal part of loss and grief
- Find ways to forgive yourself
- Share your feelings with a friend, support group, therapist or spiritual leader
- Learn to feel comfortable accepting and celebrating good things in your life
If grieving is so prolonged or severe that your physical and mental well-being are at risk, seek help from your doctor. There are ways that you can begin to cope with grief, including:
- Returning to some aspects of your daily routine
- Allowing time for physical exercise, play and rest
- Trying to find humour, even in difficult situations
- Bringing balance to your life by doing things that you enjoy
- Preparing for what the future may entail
Children and teens
Alzheimer’s disease has a large impact on family life. It is important to take the time to talk to the children and teens in your family so they understand what is happening to the person with Alzheimer’s.
The degree to which children and teens are affected by the disease depends on who has the disease — a parent or grandparent, relative or friend. Other factors include how close the child or teen is to the person and where the person lives (in the same home, nursing facility, another province or country).
Feelings and reactions
Children and teens may feel:
- Sad about changes in a loved one’s personality and behaviour
- Confused about how people get the disease and why the person behaves differently
- Afraid of the way the person behaves
- Worried that they or their parents might develop the disease
- Angry and frustrated by the need to repeat activities or questions
- Guilty for getting angry or being short-tempered with the person
- Jealous and resentful because of the increased amount of time and attention that is given to the person with Alzheimer’s
- Embarrassed to have friends or other visitors to the house
Children and teens can react in ways you may not easily recognise. They may:
- Complain of vague physical complaints, such as a stomach ache or headache
- Perform poorly at school
- Spend more time away from home
- Stop inviting friends to the house
Ways to help children and teens cope
- Maintain open lines of communication
- Offer comfort and support
- Provide opportunities for them to express their feelings
- Let them know their feelings are normal
- Educate them about the disease and encourage them to ask questions
- Respond honestly to questions
Activities that can help and be done as a family
- Go for a walk
- Do household chores together, such as folding laundry, cooking or gardening
- Listen to music, dance or sing
- Look at old photographs
- Read a favourite book or newspaper
- Develop a memory book about the person
- Make a family tree
- Watch a film
- Keep a diary
There is no right way of telling family and friends about a diagnosis of dementia. The decision will depend on the strength of the relationships and the personalities involved. Try to respect the person’s decision about how or whether to tell other people about the diagnosis.
Telling the children
When you are very upset about someone close who has dementia, it is easy to forget just how anxious and confused your children may feel. Children need clear explanations and plenty of reassurance so they can cope with the changing situation. Though the facts are upsetting, it may be a relief to know that their relative’s strange behaviour is part of an illness and not directed at them.
You will have to ensure that your explanations are at the level of your child’s age and understanding, but always try to be as honest as you can. It is more upsetting for children to find out later that they cannot trust what you say, than it is to cope with the truth, however unpleasant, with your support.
- It is always hard to take in worrying and sad information. You may find that the children will need explanations repeated quite frequently, so be very patient.
- Encourage the children to ask questions and listen to what they have to say, so you can find out what might be worrying them.
- Give them plenty of reassurance and hugs and cuddles at the right time.
- Practical examples such as your relative forgetting an address, getting words mixed up or wearing a hat in bed, can often help you make a point more clearly.
- Use humour. It often helps if you can see the funny side of a situation and laugh together. Do not laugh at the person with dementia, however.
- Concentrate on the things that the person can still do, as well as those that are becoming more difficult.
- Your children may be frightened to talk to you about their worries or show their feelings in case they upset you further. They may need to be encouraged to talk about it.
- Young children may believe that they are responsible for the illness because they were naughty or had ‘bad’ thoughts. Older children may worry that the dementia is a punishment for something their relative did in the past. In both instances, they will need to be told that this is not so.
- Children will need reassuring that it is unlikely that they or any other relative will develop dementia just because they are related to someone with dementia.
Changes for your child
It is important to remember that when someone develops dementia, everyone in the family is affected. Children need to know that you understand the difficulties they face and that you still love them, even though you may be irritable or not giving them enough attention. Try to ensure that you make time to talk to your child without interruption. Young children will need reminding of just why their relative is behaving in such a strange way and all children may need to talk about their own feelings, as new problems arise.
Difficulties they may wish to discuss might include:
- Grief because of what is happening to the person they love and anxieties about that person’s future.
- Fear, boredom, irritation or embarrassment as a result of the person’s behaviour, perhaps mixed with guilt for feeling this way. This reaction can be expected more from the teenager than from the younger child.
- Having to take responsibility for someone they may remember as having been responsible for them.
- Feelings of loss because their relative can no longer communicate with them or because things are not the way they were.
- Anger because other family members are stressed and have far less time for them than before.
Children react differently to experiences and show distress in different ways.
- Behaviour that may seem attention-seeking or naughty, nightmares or difficulty sleeping, or inexplicable aches and pains may suggest that your child is very anxious about the situation and needs even more reassurance.
- Schoolwork often tends to suffer as children who are upset find it harder to concentrate. It is a good idea to have a word with your child’s teacher so that the school is aware of the situation and understands the difficulties.
- Some children put on a cheerful front or appear uninterested although they may, in fact, be very upset. You may need to encourage them to talk about the situation and express their feelings.
- Other children may be very sad and, at times, cry. These children need a great deal of attention over quite a long period. Try to give them some time each day to talk things over, even if you are very busy.
- Teenage children often seem involved with themselves and may retreat to their own rooms or stay out more than usual. They may find it particularly difficult to cope because of all the other changes and concerns in their lives. They will need reassurance that you love them and understand their feelings. Calmly talking to them may help them sort out some worries.
Involving the children
- Try to find ways of involving your children in the care and stimulation of the person with dementia, but don’t give them too much responsibility or let it take up too much of their time. It is very important to encourage your children to continue their normal lives.
- Make it clear that just being with the person for short periods and showing love and affection is the most important thing they can do.
- Try to ensure that time spent with their relative is pleasant – going for a walk together, playing games, sorting objects or making a scrapbook of past events, for example.
- Talk about the person with dementia as he or she was, and show your children photographs and souvenirs.
- Take photographs of the person with your children to remind you all of the good times, even during the illness.
- Don’t leave your children alone in charge, even for brief spells, unless you are sure they are happy about this and can cope.
- Make sure your children know that you appreciate their efforts.
- Tell your children how proud the person would be of them if they could understand and express themselves.
People aged 65 and older consume more prescription and over-the-counter medicines than any other age group. Older people tend to have more long-term, chronic illnesses such as arthritis, diabetes, high blood pressure and heart disease, than do younger people. Because they may have a number of diseases or disabilities at the same time, it is common for older people to take many different drugs.
Using medicines may be riskier for older adults, especially when several medicines are used at one time. Taking different medicines is not always easy to do right. It may be hard to remember what each medicine is for, how you should take it and when you should take it. This is especially so for people with memory problems or dementia.
Medicines may act differently in older people than in younger people. This may be because of normal changes in the body that happen with age. For instance, as we get older, we lose water and lean tissue (mainly muscle) and we gain more fat tissue. This can make a difference in how long a drug stays in the body.
The word “drugs” can mean both medicines prescribed by your doctor and over-the-counter (OTC) medicines, which you buy without a doctor’s prescription. OTCs can include vitamins and minerals, herbal and dietary supplements, laxatives, cold medicines, and antacids. Taking some OTCs together with prescription medicines can cause serious problems. For example, aspirin and ginkgo biloba should generally not be taken with warfarin (Coumadin). Be sure your doctor knows what medicines you are taking and assures you that it is safe for you to take your medicines together. Also ask about taking your medicines with food. Herbal supplements also should be taken with care. Gingko biloba, for instance, should not be taken with aspirin, acetaminophen, warfarin, or thiazide diuretics because it may increase blood pressure and the risk of bleeding problems.
A specialist physician has said, “Be wary of the claims made by manufacturers of supplements. The homocysteine level, for instance, is simply a marker of susceptibility to vascular damage.”
The Sunday Times of 7 February 2010: “Taking ginkgo biloba, St John’s wort and other widely-used herbal supplements may be risky for people on heart medication. They may increase the potency of prescription drugs for heart disease or make them less effective. Mixing herbs and drugs could also cause serious heart-rhythm problems and bleeding, according to a review published in the Journal of the American College of Cardiology. Use of herbal supplements among elderly patients is of particular concern, because they typically have more than one disease, take multiple medications and already are at greater risk of bleeding, the report said.”
Learn about the medicines that you take and their possible side effects. Remember that medicines that are strong enough to cure you can also be strong enough to hurt you if they aren’t used correctly. For more information about medication, see the Alzheimer’s Disease International information sheet on Drugs.
Names of medicines
All medicines have at least two names – a generic name that identifies the substance and a proprietary (trade) name that may vary, depending on the manufacturer.
Drugs can be classified in line with the symptoms that they treat. The links below will describe to you the drugs that are used for the symptoms listed as well as the side-effects commonly experienced:
- Agitation, aggression and psychotic symptoms
- Sleep disturbance
- Anti-dementia drugs
- Anti-convulsant drugs
What to avoid
Before any medicines are prescribed for dementia, existing health conditions and medications need to be taken into consideration.
Whenever possible, the person should be helped to lead an active life, with interesting and stimulating daily activities. By minimising distress and agitation it is often possible to avoid the use of medicines altogether.
If, after a full assessment, it is decided that medication is necessary, it is important to remember that:
- Medication/sedation of the person with dementia must be seen as a last resort, because of the many possible side effects. BEHAVIOUR ASSESSMENT AND MANAGEMENT WITHOUT MEDICINES MUST BE THE FIRST LINE OF INTERVENTION.
- Some of the drugs taken to control behavioural symptoms can be dangerous if accidentally taken in large quantities. Make sure medicines are kept in a safe place.
- NEVER, EVER ASSUME that any changes/deterioration in a person with dementia are due to the dementia or old age. It can be side-effects, which can be rectified, or an illness that can be treated. ALWAYS mention any changes or concerns to the clinic/doctor.
- A medicine that has worked well does not always continue to be effective. Dementia is a degenerative condition. The chemistry and structure of the brain will change during the course of the illness.
- If the person also has Parkinson’s disease, many of the medicines used for people with dementia may not be used with the Parkinson’s medication.
- Where epilepsy is being treated with Carbamazepine (Tegretol), the Carbamazepine can affect the levels of the antipsychotics in Risperdal.
- Etomine (Clothiapine) given to a person with dementia will increase both the confusion and agitation and Oxazepam (Serepax) will increase the disorientation and confusion.
- If symptoms are difficult to control, the doctor may refer you to a specialist for further advice.
- Some medicines need to be taken regularly to have an effect – for example, antidepressants. Other medicines such as hypnotics or anxiety-relieving medicines may be more effective when taken on an ‘as needed’ basis. This should only be done after discussion with the doctor.
- Do not expect immediate results. Benefits may take several weeks to appear, particularly with antidepressants, which can take two to three weeks to have an effect.
Medicines for behavioural symptoms
People with dementia may at some point in their illness develop symptoms such as depression, restlessness, aggressive behaviour and psychosis (delusions and hallucinations).
The person is not just being difficult. He or she is trying to tell you something but is unable to, because of problems with communication. An example is if the person becomes physically or verbally aggressive, s/he may be expressing anger or frustration but cannot tell you. It is important to try to understand the reasons for this behaviour and try and prevent it from happening again.
It may, however, be necessary to have medication prescribed if the behaviour is really out of control and is a problem for the person with dementia and those living with that person.
If on medication, the person must be evaluated at least every two months, as the medication should not be prescribed indefinitely.
Drugs used in treatment
Major tranquillisers (also known as neuroleptics or antipsychotics) are medicines that were originally developed to treat younger people with schizophrenia.
They are frequently prescribed to people with dementia for symptoms including agitation, delusions (disturbed thoughts and false beliefs), hallucinations (seeing and hearing things that aren’t there), sleep disturbance and aggression. Commonly used medicines include thioridazine, haloperidol and risperidone.
Side-effects include excessive sedation, dizziness, unsteadiness and Parkinsonism, when the symptoms resemble those of Parkinson’s disease (mask-like face, shakiness, slowness and stiffness of the limbs). Tranquillisers may be dangerous for those with dementia with Lewy bodies or Parkinson’s disease.
A new generation of major tranquillisers may be less prone to produce troublesome side-effects and these include risperidone.
Whichever medicine is used, treatment with major tranquillisers should be reviewed regularly and the dose reduced or the medicine withdrawn if side-effects become unacceptable.
Excessive sedation with major tranquillisers may reduce symptoms such as restlessness and aggression, but at the same time, reduce mobility and worsen confusion.
Anticonvulsant drugs such as sodium valproate and carbamazepine (Tegretol) are sometimes also used to reduce aggression and agitation, as is the antidepressant drug trazodone.
Drugs for treating sleep disturbance
Sleep disturbance, and in particular persistent wakefulness and night-time restlessness of the person with dementia, can be very disturbing for carers. Many of the drugs commonly prescribed for people with dementia can cause excessive sedation during the day, leading to an inability to sleep at night.
Increasing stimulation during the day can reduce the need for sleep-inducing medication (hypnotics) at night. Hypnotics are generally more helpful in getting people off to sleep at bedtime than they are at keeping people asleep throughout the whole of the night. They are usually taken 30-60 minutes before going to bed.
Chlormethiazole is generally well tolerated by elderly people, although some cannot take it because it produces an unpleasant itching sensation in the nose. Benzodiazepines (see section on drugs for treating anxiety) such as temazepam are frequently prescribed. Thioridazine is also sometimes used for night-time sedation (see section on drugs for treating agitation). Examples are flurazepam (Dalmane) and temazepam (Temazepam).
If excessive sedation is given at bedtime, the person may be unable to wake to go to the toilet and incontinence may occur, sometimes for the first time. If the person does wake through the night despite sedation, increased confusion and unsteadiness may occur.
Hypnotics are best used only when the carer and person with dementia feel that a good night’s sleep is necessary for either or both of them. The doctor should regularly review the use of such drugs.
Drugs for treating depression
Symptoms of depression are very common in dementia. In the early stages they are usually a reaction to the person’s awareness of the diagnosis. In the later stages of the illness, depression may also be the result of reduced chemical transmitter function in the brain. Both types of depression can be treated with antidepressants, but make sure that this is done with the minimum of side-effects.
Antidepressants may be helpful in improving persistently low mood and also in controlling the irritability and rapid mood swings that often occur in dementia and that are also seen after a stroke.
The doctor will usually prescribe antidepressants for a period of at least six months. For them to be effective, it is important that they are taken regularly, without missing any doses.
Improvement in mood typically takes two to three weeks or more to occur, whereas side-effects may appear within a few days of starting treatment.
Tricyclic antidepressants such as amitriptyline, imipramine or dothiepin, which are commonly used to treat depression in younger people, are likely to increase confusion in someone with dementia. They might also produce dry mouth, blurred vision, constipation, difficulty in urination (especially in men) and dizziness on standing, which may lead to falls and injuries.
Newer antidepressants are preferable as first line treatments of depression in dementia.
Drugs such as fluoxetine, paroxetine, fluvoxamine, sertraline and citalopram (known as the selective serotonin re-uptake inhibitors) do not have the side-effects of tricyclics and are well tolerated by elderly people. They can produce headaches and nausea, especially in the first week or two of treatment.
Drugs for treating anxiety
Anxiety states, accompanied by panic attacks and tearfulness, may lead to demands for constant company and reassurance. Short periods of anxiety, for example in response to a stressful event, may be helped by a group of drugs known as benzodiazepines. Continuous treatment in excess of two to four weeks is not advisable because dependency can occur, making it difficult to stop the medication without withdrawal symptoms.
There are many different benzodiazepines, some with a short duration of action such as lorazepam and oxazepam, and some with longer action such as chlordiazepoxide and diazepam. All of these drugs may cause excessive sedation, unsteadiness, a tendency to fall, and they may worsen confusion and memory problems that are already present.
Major tranquillisers (see above) are often used for severe or persistent anxiety. If taken for long periods, these drugs can produce a side-effect called tardive dyskinesia, which is recognised by persistent involuntary chewing movements and facial grimacing. This may be irreversible, but is more likely to disappear if it is recognised early and the medication causing the problem is stopped.
The new generation of anticholinesterase drugs was originally developed to improve memory and the ability to carry out day-to-day living activities. Recent evidence suggests that they also have beneficial effects on behaviour, especially lack of drive, mood and confidence, delusions and hallucinations.
Taking these medications may therefore reduce the need for other medications. In higher doses, however, anticholinesterase drugs may gradually increase agitation and produce insomnia with nightmares. Examples are donepezil (Aricept), rivastigmine (Exelon) and galantamine (Reminyl).
Another type of drug, an NMDA receptor antagonist known as memantine (Ebixa), is generally well tolerated and unlikely to cause gastro-intestinal tract side-effects.
- Sodium valproate (Epilim)
- Carbamazepine (Tegretol)