Understand the caregiver’s role

Caregivers have to provide suitable care to the dementia patient. They have to make required adjustments in their lives

What caregivers can do:  Get ready for the caregiver role by understanding the work it will require, the skills that will be needed, and the amount of time and energy it will need. Understand how they have to change other aspects of their lives to fit in the caregiving work.

In India, almost all persons with dementia live at home and are cared for by family members. Caregivers could be the children, siblings, spouse, or even distant relatives. Most caregivers have no idea what they will need to do. This page discusses the caregiver role.

Additionally, other pages on the website discuss planning care, skills needed for care, issues around care, and other topics.

Each caregiver situation is different

The word “caregiver” is used for anyone handling care. Books and articles often talk as if all caregivers have similar roles and responsibilities. However, there is no “standard” dementia caregiver. Caregivers vary widely in what they do for the patient. Every patient is different, as is every care situation. And so the caregiver “role” is also different.

One common thing is that the patient has dementia. The caregiver’s understanding of dementia and care with therefore form the foundation of care.

There are many differences in various caregiving situations. Examples are: the state of the patient, the tasks the caregiver has to do, and the family structure and role of various family members. The caregivers differ in the time, energy, and money they can use for caregiving, etc. All these affect how important or tiring the person finds caregiving. It affects their emotions, physical fatigue, social life, etc.

As a caregiver, depending on your situation, you need to be clear about what your responsibility is. If you live with the patient and have to support the patient in day-to-day tasks, you need more detailed information than you brother or sister who lives separately. Even in the same house, you may be the family member who does most of the work, or you may only be helping sometimes or during emergencies. What you have to do for the patient will determine what you have to learn for your role. Caregiver manuals explain many things. You have to select and adapt existing suggestions for your situation. For example, even though you are a family caregiver, you can find useful tips in articles written for professional caregivers.

Caregivers also differ in how the care work affects their sense of identity and their emotions, such as guilt, blame, responsibility, and “accountability.”

Caregivers may be teens, youth, middle-aged, or even elderly. They may be male or female. They may be caring for someone of the same sex or opposite sex. They may be rich, middle-class, or poor. They may range from well educated and employed to the illiterate and unemployed. Expectations around them and the support available to them also differs accordingly. This affects care approaches and choices.

Another factor that is different between situations is which disease is causing dementia. Many discussions talk of dementia as if it is one thing. But dementia has many symptoms. The disease affects which symptoms are more prominent. It also affects how the symptoms will change with time. If you are looking after a fast-deteriorating younger-onset FTD patient with personality changes, you are likely to gave behavioral problems. But if you are caring for a mild-mannered patient with vascular dementia, the care you need to give will be very different.

Note:This site’s discussions are intended for India-based family caregivers living with the patient. The site also discusses special care situations and related issues, like long-distance care, family conflicts, early onset care planning, etc.

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Prepare for the caregiving role.

Caring for someone with dementia is difficult because patients decline in many ways. Care usually goes on for several years, and caregivers have to make many changes in their life to provide this care. They find it heart-breaking to watch the patient lose memories and ability to do things. Changes in the patient’s personality are difficult to accept and adjust to.

The Dementia India Report 2010 (PDF file) explains that care giving for dementia is long-term and the needs for care increase with time. Later on, in several cases, it could involve almost constant supervision and surveillance. It involves significant expenditure of time, energy, and money for possibly long periods of time. The tasks may be unpleasant and uncomfortable, and are stressful and exhausting.

dementia caregiver tries to balance work and caregivingGiven the long and intense care required for dementia, you have to prepare for the role if you want to handle it well and without stress. You would already be balancing several roles. Roles being balanced may include professional work, home maker, supporting a spouse, parents, or children, being a volunteer in your local society, being active in sports, and so on. All these need time and energy. To be able to also become a caregiver you need to know the time, energy and money this care role will need so that you can adjust other work for it. Usually this requires significant changes.

Here are some important things to consider.

Understand the disease causing the dementia. Learn about the dementia-causing disease and its typical symptoms. To discuss treatments with doctors, read up on available medicines. Treatments of irreversible dementias are not very effective. They are typically used in early stages for some types of dementia. They have side-effects, and do not work for everyone. Understand what is involved, including side-effects.

Learn how the disease may progress so that you can plan for it. (See: Diseases that cause dementia and Stages of dementia)

Understand how dementia affects the patient. Understand how dementia affects the patient. Dementia changes the way patients interact with their surroundings. Many caregivers do not understand the difficulties of the patients. They think the patient is being stubborn and hurtful. Often, caregivers get upset and stressed. Patients sense the caregiver’s mood and get even more upset. You must understand how dementia affects the patient in order to give good care.(See: How dementia impacts behaviour)

Plan for caregiving. You need to plan how to handle care now and in the future, when the dementia worsens. You need to be ready to provide care for several years. If you try to do too many things in the beginning, you will be too tired physically and emotionally to care for the patient when the patient is even more dependent on you.

caregiver negotaties with boss to work from homeYou have to change your life to include the new responsibilities. Often, dementia patients cannot be left alone because they may harm themselves. They also need help for many tasks. You will have to make sure someone remains with the patient. This could mean using attendants (full-time, or at least for the hours when you go out). Or using day care services. You may need to switch to a flexi-time job. Travel may not be possible. You may need to choose work-from-home package. If confined to the house most of the time, you also have to plan better for outside activities, such as ATM withdrawals and shopping. Socializing and vacations may become difficult.

Planning includes setting up systems to support caregiving. You can think of possible problems and decide what to plan for. Some actions are obvious. For example, the home must have a first aid box. You should have ready access to important phone numbers such as ambulance services, doctors who do home visits, home nursing agencies, chemists who deliver medicines at home, and persons to contact in emergencies. You must plan how you will take the patient for medical checkups and emergencies. You must be ready for emergencies.

Dementia patients usually don’t like hospitals and clinics. They get confused by questions posed by doctors and may give incomplete or wrong answers. Many doctors in India don’t know enough about dementia; they may believe the wrong data given by confused patients. Wrong medication may get prescribed. Caregivers need doctors who know the patient’s case history. Home nursing services can be used to minimize hospital visits.

Home adaptations also have to be considered. Dementia patients often get confused by their surroundings. Some changes at home may reduce their confusion and anxiety. Such changes are more difficult if the family lives in a small house or a rented house, or when there are many family members.

Planning should ideally be a family activity that involves siblings, children, other family and friends, even if they live as a distance. It is best if the family understands dementia and caregiving. The whole family can then discuss how to share the work and expenses. It is also good for the family to agree on how to handle the advanced stages of dementia. This includes things like using strong antibiotics, tube feeding, and ventilators.

Learn caregiving skills. Caregiving involves physical support for various activities. It includes handling emotionally upset patients. Learn how to talk to the patients. Learn how to help patients with their daily tasks while encouraging them to remain as independent as possible. Often, patients may harm them or people around them. They may get angry, or tend to wander, or neglect themselves. You have to learn how to stay calm and handle challenging behavior.

Different care skills are needed at different stages of dementia. For example when patients are bed-ridden, you need home nursing skills such as how to change a soiled sheet, and how to prevent pressure sores.

You need many caregiving skills because you have to help someone who may not understand you or cooperate with you. Support groups and professionals can help you see which topics are useful for you. They can help you get useful information. You can also read books and watch training videos. (See: Caregiver Essential Toolkit)

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Understand how caregiving may affect you. Caring for someone with dementia is not just about doing a number of tasks every day. It will affect your life in many ways.

Understand the physical exhaustion involved. Looking after a dependent but uncooperative patient is often extremely tiring. It has been called to a 36-hour job. If you are physically unfit, take this into account when planning care. People around the family must also understand how exhausting care work is so that they can support and help you. For this, you have to keep them informed of the situation.

Be prepared for social isolation and embarrassments. Dementia patients forget things. For example, they may forget that they have eaten their breakfast. Patients also get suspicious because they forget where they have placed things. They may remember things wrongly, or misunderstand what they hear. They may therefore complain that you are starving them or torturing them. They may even accuse you of stealing their money or property. This is embarrassing and hurtful. In some forms of dementia, patients may behave in socially unacceptable ways such as undressing in public or making sexual advances. They may laugh at a funeral. Such behavior is problematic because people don’t believe it could be caused by a disease. You will have to try to create a support network that understands this problem and explains it to others.

dementia patient claims he hasn't had breakfast half-an-hour after eating it
Sometimes others may say something insensitive to you. They may complain or blame. Even close family members make hurtful remarks because they feel the patient is being neglected. Or they think that you are overreacting and exaggerating the problems.

Awareness of dementia and its impact on patients is poor in India. Make sure that your family, neighborhood and friends appreciate the patient’s situation. People may not believe what you tell them, so use reliable literature to convince them. If someone criticizes you, you will need to explain the situation calmly, If you cannot do so, excuse yourself and walk away instead of exploding. Explain things when you are calmer. Ask others to help you in some care activities; this may make them appreciate the problems you are handling. Building a suitable support network takes time, so start building this knowledge and support early.

The discouraging, even heart-wrenching thing about the dementia and Alzheimer patients is that you never know; you have no clue about their emotion – whether they are able to place and connect you. An indecipherable smile, a momentary sign of recognition, a faint touch of his/her hand on your face are the only the incentives you get to keep you going. But the frequency of such gestures goes on diminishing with time.

I experienced this in case of my mother till she was completely disoriented about space, time, and persons.

Sanjaya, caregiver

Recognize the emotional demands of caregiving. You will see the patient lose their memories and reach a point where they don’t recognize you. Patients are frustrated by their inabilities. They may withdraw or get angry. Their personalities may change. They may become abusive. These can be heart-breaking for you. You may feel you are not loved or appreciated.

The patient’s condition gets worse in spite of your care because dementia is a progressive disease. Your emotions may include helplessness, sorrow, resentment, anger, and frustration.

Do not blame yourself or feel bad about your emotions. It is normal for caregivers to feel helplessness or frustration when they see someone they love going through dementia. Even those who are not emotionally close to the patient feel very uncomfortable seeing the patient change so much. And caregivers who have past conflicts with the patient may resent having to care of someone who was nasty to them when younger. Please know that all such caregiver emotions are common and normal.

Use memories of good days to help you on bad days. On some days, caregiving is fulfilling because the patient shows improvement or smiles. On other days the patient is irritated or complains to others. This could make you feel your hard work has been pointless. You must remember that it is not your fault if a patient feels worse on some days; ups and downs are normal in dementia. (See: Caregiver emotions and stress)

 

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Take help and take care of yourself. Caregiving requires a lot of work for many years. You cannot handle it alone. You need to get whatever help you can. You also need to take care of your own health and well-being.

Use support groups and various facilities available. Caregivers often feel isolated because they no longer have enough common topics to share with old friends. Support groups reduce such loneliness, as do online communities. To reduce care work, consider employing attendants and home nurses, avail day care facilities, or take a vacation by using respite care. If balancing caregiving with other roles proves impossible, consider options like moving the patient to a long-term care facility or hospice. Discuss pros and cons with counselors for such steps. These options are not easily available in India, and may be costly. Other pages on this site discuss ways to get support.

Nurture yourself. You may feel too tired to take care of your own health and well-being. Stress is common among dementia caregivers. But to eb able to take good care of the patient you have to try and remain healthy and cheerful. Take time to indulge in whatever relaxes you: walks, music, a good book, painting, maybe an outing with a friend. Eat nutritious food and remain physically active. Yoga and meditation also contribute to health and well-being. Even so, some days may be more stressful. Ask others for help to the extent you can. A stressed caregiver cannot help a dementia patient because the patient senses and responds to the tension, and the situation worsens. Given the long stretch that caregiving for dementia involves, you cannot ignore self-care. It is difficult to get support for nurturing and breaks in India. Read how to get respite even with limited options: Caregiver emotions and stress.

Self-care activities need planning and setting up, and should be started early so that they are available when needed. For example, you may become home-bound as care responsibilities increase. Set up your home and surroundings so that you can continue to eat nutritious food, exercise, and get help for your illnesses even when home-bound. You could attend an exercise or yoga class or a meditation class in the earlier days of caregiving. Or buy home exercise equipment. This way you can exercise or meditate at home when you become home-bound. Find out about neighboring home caterers who can supply tasty and nutritious food when you don’t want to cook. Gather information on call-at-home doctors and other home services.

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Summing up.Caregiving is a unique and personal journey, and everyone handles it differently. Dementia caregiving involves entire families. If done in a shared way and with compassion, it can bind the family and strengthen the values the children inculcate.

Some family situations are very challenging. Caregiving may result in severe money problems. The work may be very tiring physically. There may be no support systems or respite. Just getting through each day is an achievement in such cases. Every possible tool or tip is valuable because it may make surviving possible. Knowing that you are doing your best can be a consolation.

Fortunately, in other situations it is possible to adjust to caregiving and find a suitable pace and balance. Caregiving can have some very beautiful moments, and if you plan and adjust to the role, you may find that caregiving adds a sense of meaning and fulfillment to your life.

Sometimes the patient flashes a smile at you, or friends and relatives appreciate your effort. Memories of such good moments can give you relief when caregiving work leaves you unhappy or tired. Think about these nice moments when you feel alone, ignored, taken for granted, or blamed unfairly. Remind yourself that caring for people is important. Everyone would like to be cared for when needed. You are performing a very necessary role–the role of caring–and you can appreciate yourself even if others do not.

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See also….

A presentation is available on slideshare.net on the topic: Dementia caregivers: introducing the caregivers (Presentation at ARDSICON 2013 Guwahati India).

Two related notes are available:

Some relevant interviews on this site:

Various caregivers have shared their experience of preparing for the caregiver role. Here are some examples:

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[This page was last updated in June 2015]