Understand the dementia caregiver’s role

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Caregivers have to provide suitable care to the person with dementia. 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.

Sections on this page:

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 a lot in what they do for the person with dementia. Every person with dementia is different, as is every care situation. And so the caregiver “role” is also different.

One common thing is that the person who needs care has dementia. The caregiver’s understanding of dementia and care will therefore form the basis of care.

There are many differences in various care situations. Examples are: the way dementia is affecting the person, 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, you need to be clear about your situation and responsibility. If you live with the person with dementia and have to support day-to-day tasks, you need detailed care information. Your brother or sister who live separately don’t need to know so much about actual care skills. 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. The care tasks required will decide what you need to learn for your role. Caregiver manuals explain many things. Select and adapt existing suggestions from them based on your need. For example, even though you are a family caregiver, you will find useful tips in articles written for professional caregivers.

Caregivers also differ in how this 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 affects how symptoms change with time. If you are looking after a fast-deteriorating younger-onset FTD individual with personality changes, you are likely to have behavioral problems. But if you are caring for a mild-mannered person who had vascular dementia, the care needed will be very different.

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

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A special note on lessons from the COVID pandemic.

This page discusses various aspects of the care role in some detail below. Additionally, as the special challenges posed by COVID showed, care approaches may need significant modifications in challenging situations like the pandemic. The caregiver role needs to factor in the lessons learnt during the pandemic.

While care always involves keeping the person healthy and protecting them from medical problems, precautions necessary because of the vulnerability to infection and complications need special attention for persons with dementia, specially given their cognitive impairment, age, and possible comorbidities.

Care work is best handled when distributed between family members. In cases where workload increases during crises (like the pandemic), discussing care work distribution becomes even more important.

The challenges posed by the COVID 19 situation affect care approaches and complicate the caregiver role, so please keep these in mind along with the discussion below. (You can also read a discussion on the impact of COVID on dementia care at Dementia Home Care during COVID – Infection Risk, Vaccination, Care Approach.)

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Prepare for the caregiving role.

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

dementia caregiver tries to balance work and caregiving

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 directed at giving relief from symptoms and aim to improve the quality of life of the person. They may help some persons a lot, especially in early stages of dementia. But they may not work for others, and are not suitable for all forms of dementia. There may be side-effects.

Learn how the disease may progress so that you can plan for it.

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Understand how dementia affects the person.

Dementia changes the way persons interact with their surroundings. Many caregivers do not understand the difficulties faced by someone with dementia. They may think the person is being stubborn and hurtful. Often, caregivers get upset and stressed. The persons with dementia sense the caregiver’s mood and get even more upset. You must understand how dementia affects the person to be able to give good care.

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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 person when the person becomes even more dependent on you.

caregiver negotiates with boss to work from home

You have to change your life to include the new responsibilities. Often, people with dementia cannot be left alone because they may harm themselves. They need help for many tasks. You may have to make sure someone remains with the person. 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 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 be easily able to find 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 person for medical checkups and emergencies. You must be ready for emergencies.

Persons with dementia 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. You need to look at all these aspects to see what you have to do.

Home adaptations have to be considered. People with dementia 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 good for the family to agree on how to handle advanced dementia. This includes things like using strong antibiotics, tube feeding, and ventilators.

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Learn caregiving skills.

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

Different care skills are needed at different stages of dementia. For example when persons with dementia become 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 for dementia care. Care is also difficult 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 read books and watch training videos.

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Understand how caregiving may affect you.

Caring for someone with dementia is more than doing care tasks every day. It will affect your life in many ways.

Understand the physical exhaustion involved. Looking after a dependent but uncooperative dementia person is often very tiring. It has been called a 36-hour job. If you are physically unfit, take this into account when planning care. It is good if people around the family understand the situation 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. People with dementia forget things. For example, they may forget that they have eaten their breakfast. They may get suspicious because they forget where they have placed things. They may therefore tell others that you are starving them or torturing them. They may even accuse you of stealing their money or property. In some forms of dementia, the persons may behave in socially unacceptable ways such as undressing in public or making sexual advances. They may laugh at a funeral. Such behavior is a problem because others around them don’t believe such unacceptable behavior is caused by a medical condition. Try and create a group of at least some friends and relatives who understand about dementia–then they will be able to support you and also explain things to others who are unbelieving or critical.

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

Awareness of dementia and its impact is poor in India. Make sure that your family, neighborhood and friends appreciate the situation. Use reliable literature to convince them. If someone criticizes you, explain the situation calmly. If you cannot stay calm, 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 your problems. It takes time to build a support network, so start telling friends, relatives, and colleagues about the situation and building your support network as early as you can.

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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 dementia persons lose their memories and reach a point where they don’t recognize you. Persons with dementia often get 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 person’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 someone with dementia feel very uncomfortable seeing the person change so much. And caregivers who have past conflicts with the dementia person may resent having to care for 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 person with dementia shows improvement or smiles. On other days the person 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 dementia person feels worse on some days; ups and downs are normal in dementia.

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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 person 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. Stress is common among dementia caregivers. But to take good care of someone with dementia you have to try and remain healthy and cheerful. Take at least some time to do things that relax 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 very stressful. Ask others for help to the extent you can. A stressed caregiver cannot help a dementia person because the person senses and responds to the tension. This makes the situation worse. You cannot ignore self-care. Though it is difficult to get support for nurturing and breaks in India, try to plan and use creativity to nurture yourself at least to some extent.

Self-care activities need to be planned and set up, and this should be started early so that self-care is in place when needed. For example, you may become home-bound as care responsibilities increase. Set up things so that you can eat nutritious food, do exercise, and get help for your illnesses even when home-bound. Attend an exercise or yoga class or a meditation class in the earlier days of caregiving. Maybe, buy home exercise equipment. Then you can exercise or meditate at home. 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 personal journey, and everyone handles it differently. Dementia care involves all family members. If shared, it can make family bonds stronger. Children can learn better family values.

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 difficult. Every possible tool or tip is valuable because it may help. You must know that you are doing your best and that is all that anyone can expect from a person.

Fortunately, in other situations it is possible to balance dementia care and other work moderately well. Also, caregiving can have some very beautiful moments. If you plan and adjust to the role, you may find that helping someone through their dementia problems will give you a sense of meaning and fulfillment.

Sometimes the person with dementia smiles at you. Or friends and relatives appreciate your effort. These good memories can make you feel better on days when the 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, and you can appreciate yourself even if others do not.

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See also….

Resources/ references from Dementia Care Notes and related sites.

Detailed pages for the topics discussed above:

Some relevant interviews on this site:
• A husband gives up his career and changes his lifestyle to become a caregiver: She would hold me for support.
• A daughter-in-law gives up her career to coordinate care: Caregiving challenges, trained ayahs, depression.
• Caregivers may be elderly spouses: A 78-year old caregiver speaks or teenaged children Thrust into caregiving at the age of fifteen.

External links: Pages about the caregiver role and personal experiences around them:

An article for caregivers (not necessarily dementia): 6 Things No One Told Us About Being a Caregiver Opens in new window.

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Next: Plan care for various stages of dementia
Dementia Care Notes