The STRiDE project’s full title is Strengthening Responses to Dementia in Developing Countries. The project will run for 4 years – it launched in 2018 and will end in December 2021. The project is funded by the UK Research Council – Global Challenges Research Fund.
Few of us will escape the impact of Alzheimer’s Disease. The grim pay-back from being healthy, wealthy or lucky enough to live into our late 80s and beyond is dementia. One in three – maybe even one in two of us – will then get dementia and forget almost everything we ever knew. And the lucky others? They will probably end up caring for someone with Alzheimer’s, the most common form of dementia. But it is far more than just a personal family tragedy. It is a major economic challenge to governments and health-care providers around the world, and will force some fundamental rethinking on how we care for sufferers. The costs are already immense. Dementia is now a trillion-dollar disease, and with the numbers of patients doubling every 20 years, the burden will fall unevenly on developing countries where the growth rate is fastest. In this first episode of the series, we explore how fear in some parts of the world is stigmatising those who have it, and denying help to those who need it. But also how to overcome the fear.
Presenter: Andrew Bomford. Series Producer: Estelle Doyle
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 with dementia may feel confused and anxious and in need of reassurance. They may also have some important decisions to make, including:
- How and when to tell family and friends of the diagnosis
- Whether to carry on working
- When to stop driving
- How they would like to be cared for, now and in the future
There may also be joint decisions you both need to make – about money, for example.
Try to talk to the person you are caring for, offering as much emotional support as you can. The person may want to involve you in such decision-making.
Having a diagnosis usually raises as many questions as it answers. What will happen in the future? What can be done to help? Why has this happened? Will other members of the family develop the same problems?
Don’t be afraid to ask – your GP or specialist is a good place to start, or contact your local branch of Alzheimer’s South Africa. You could also contact the Alzheimer’s helpline on 0860 102 681. Having a name for the person’s problems can be helpful, but you will need as much information as possible if you want to plan for the future.
What can be done at this stage?
You and the person with dementia may want to think about the following issues:
- Are there any treatments available that will help the person’s dementia or treat other conditions that have been identified? If the person has vascular dementia, what can be done to prevent further damage? Discussion of these issues with the specialist is an important follow-up to the diagnosis.
- You may want to think about your medical support in the future. Does the specialist or the clinic provide a follow-up service or only the assessment? A good working relationship with the doctor is invaluable.
- Some families also discuss people’s preferences about their future care, at this stage. Do they want to be cared for in a home, for example? This sort of discussion is often put off, but may be of great value when openly and honestly talked through.
- Persons with dementia may wish to write down their wishes regarding their treatment and care in the future, when they may not be able to communicate their wishes. This document, commonly referred to as a living will, may not be used as a legal document. It serves as a guideline for the carer and family when the time comes for decisions to be made concerning the person with dementia, so that his or her wishes can be taken into consideration.
- Are there financial matters that need to be discussed and sorted out? A Power of Attorney may be obtained whilst the person with dementia is ‘of sound mind’. Once the person is unable to handle his or her affairs, because of the dementia, the Power of Attorney becomes invalid and other options need to be considered.
- You might like to find out now what other practical support and advice is available in your area for both you and the person with dementia. It makes sense to try to arrange help before a crisis occurs. More
Especially in the early stages, there ’s a lot you can do to help the person you are caring for, to stay independent.
It may be tempting to do things for people with dementia, but they are more likely to feel confident and to retain a sense of self-worth if they are given the chance to do things for themselves, with appropriate support if necessary.
There are ways of making everyday tasks a little easier for the person with dementia.
- Encourage the person you are caring for to divide tasks and activities into manageable chunks. You might think about writing down some instructions.
- Learn to be patient. Things may not get done quickly or perfectly first time round.
There are many practical ways to help the person deal with memory problems. Memory aids work by gently reminding the person of easily forgotten facts.
Try the following: –
- Putting a notice board for messages in an obvious place. You can use this to write notes, reminders that a visitor is coming or that a delivery is going to be made, for example
- Marking a calendar with the date, or getting an electronic calendar that automatically changes the day and date
- Encouraging the person you are caring for to keep a notebook or diary to write down important things such as appointments, people’s names, a list of things to do, any thoughts and ideas
- Pinning a weekly timetable to the wall, adding things to it as you think of them
- Keeping important things like money, keys and glasses in the same place
- Having a daily newspaper delivered – the date and day of the week are always on the front page
- Putting labels on cupboards or drawers to show where things are
- Placing helpful telephone numbers by the phone where you can see them
- Writing reminders to lock the door at night or put the rubbish out on a certain day, for example
- Putting a note on the door as a reminder to take his or her keys
- Labelling family photographs – those on display and those in albums
- Encouraging visitors (friends, family and professionals) to write the time and purpose of their visit in a book
(Source: Caring for the person with dementia – a handbook for families and other carers)