Understand the caregiver's role

As dementia patients continue to lose their ability to do things, they become increasingly dependent on family members or friends who have no idea what this caregiver role may involve.

Caregivers have to provide suitable care to the dementia patient and 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 may have to change other aspect of their lives to fit in the caregiving work.

On this page:

Dementia caregiver’s profile and effort involved

Caregiving for a dementia patient is very different from the caregiving for patients with other chronic conditions. The patient’s condition will become progressively worse and is difficult to see. Often, diagnosis happens in mid-stage and patients do not understand their situation and cannot say how they want to be cared for. They are difficult to communicate with, are often unable to cooperate with the caregiver who is tring to help them. They exhibit challenging behaviour, such as aggression and harming themselves and others. Their personality may change a lot, too. A good overview of how dementia caregiving is different from other caregiving (such as, in terms of activities and time required and the impact on caregivers) is available in the 2010 Alzheimer’s Disease Facts and Figures.

Normally, caregivers for dementia patients are family members: son, daughter, son-in-law, daughter-in-law, sibling, or spouse. Sometimes, caregivers are friends. There are also paid caregivers, and institutions that take care of dementia patients.

The Dementia India Report 2010 recognizes that, in India, families are the main caregivers and they need support. Some excerpts that describe the scope and effort involved in caregiving for someone with dementia:

Care giving has been defined as “… the provision of extraordinary care, exceeding the bounds of what is normative or usual in family relationships. Care-giving typically involves a significant expenditure of time, energy, and money over potentially long periods of time; it involves tasks that may be unpleasant and uncomfortable and are psychologically stressful and physically exhausting.”

…care giving is a long-term evolving process. The onset of caring is often hard to define. The need for care may precede or post-date a formal diagnosis of dementia. Need for care tends to escalate over time, from increased support for household, financial and social activities, to personal care. Later on, in several cases, it could involve almost constant supervision and surveillance.

And, as we can expect in India:

Dementia care in India is almost entirely home based.

[Back to top]

Caregivers differ in terms of the type of support they give the patient and how responsible they are

The word “caregiver” is often used as a term that applies to anyone handling care for a dementia patient; books and material available for caregivers are often written as if all caregivers are similar in terms of their role and responsibilities towards the patient. However, the fact is that caregivers vary widely in what they are doing for the patient. There is no “standard”/ “uniform” experience of being a dementia caregiver. Just as every patient is different, every caregiving situation is different.

There is, therefore, no standard interpretation of the terms “caregiver” and “caregiver’s role.” Understanding the diversity and commonality makes it easier to appreciate any discussion on caregiving, as we are then more sensitive to the possible differences and similarities of the care context.

What caregivers have in common is that they are involved in the care of a dementia patient, and that their actions/ decisions may affect this person’s health and well-being. Also, their understanding of dementia and care can affect the way they handle caregiving. But caregivers vary a lot, too, in multiple aspects like the state of the patient, the tasks the caregiver does, the family structure and role of multiple family members, amount of energy, money, and time available for caregiving, distribution of responsibility, etc. These affect how important or overwhelming caregiving is for that person, and also their emotions, physical fatigue, social life, etc.

Once caregivers understand the scope and responsibility of their specific role, they are in a position to evaluate and use available advice/ resources, picking what applies to their type of caregiving, even if the material is written for a different type of caregiver (for example, a family caregiver alert about this may find useful tips in material written for paid/ professional caregivers).

Consider some examples of diverse caregiving roles and how they affect the type of advice needed. A live-in caregiver needs more detailed skills and knowledge than a distance caregiver, but a distance caregiver does need a realistic idea to contribute meaningfully. Even for family members living with the patient, some persons are involved almost full-time, while others help out sometimes and in emergencies, so they differ in how caregiving impacts their sense of identity, emotions like guilt, blame, responsibility, “accountability”, and levels of stress, fatigue, isolation, etc. Caregivers may vary in age (they may be teens/ youth, middle-aged, elderly). They may be male or female, looking after a patient of the same or opposite sex. Societal expectations and available support differ depending on caregiver profile, and this affects caregiving approaches and choices.

Caregiving also differs based on the dementia-causing disease, as that affects the symptoms and progression. The challenges faced by someone looking after a fast-deteriorating younger-onset FTD patient with disinhibition are very different from someone looking after a mild-mannered cooperative patient with a plateaued case of vascular dementia.

Note: This site’s discussions are aimed at India-based family caregivers living with the patient, either handling many chores or supervising attendants. The site also discusses cases where the caregiving situation/ role is different, and related issues (e.g., long-distance care, family conflicts, early onset care planning, etc.)

[Back to top]

Preparing for the caregiving role.

Caregiving for dementia patients poses special difficulties because patients decline cognitively and become increasingly dependent, making the caregiver’s role critical in their care.  Care for dementia patients usually stretches over several years, and caregivers need to make major adjustments in their life to perform this work. They also find it heart-breaking to watch the patient lose memories and ability to do things over the years. Changes in the patient’s personality are also difficult to accept and adjust to.

dementia caregiver tries to balance work and caregivingGiven the long-drawn and intense nature of caregiving for a dementia patient, we need to prepare for this role if we want to handle it effectively and without getting burnt-out with stress. Our lives are already a delicate balance of several roles. We are professionals, home makers, spouses, parents, children, volunteers in community activities, enthusiastic sportspersons, and artists–all these aspects of our personality take up our time and energy. To integrate caregiving into our life, we need a realistic idea of the time, energy and money required for this, and then adjust our other commitments and expectations to fit in. Typically, the changes required are significant.

To prepare for the role, we need to understand about the disease and about caregiving. We have to plan for caregiving and identify what to learn. The most stressful part of dementia care is the emotional impact on the caregiver; therefore, we must understand this aspect of caregiving and be ready for it.

Understand the disease causing the dementia. To effectively interact with doctors for the treatment of the patient, we need to know about the disease and the available medicines. Treatments of irreversible dementias are still not very effective; they are typically used in early stages, can have side-effects, and do not work for everyone. We need to understand the trade-offs so that we can participate in the decision making regarding treatment. We need to understand the possible adverse symptoms and emergencies to be alert for.

We also need to understand the expected progression of the disease so as to plan for it. (See: Diseases that cause dementia and Stages of dementia)

Understand how dementia affects the patient. Dementia changes the way patients interact with their surroundings. Uninformed caregivers may consider patients stubborn and hurtful because we do not understand what patients are undergoing and why they seem uncooperative or react in apparently in aggressive or withdrawn ways. Often, caregivers get upset and stressed, and their emotional response starts a downward spiral in interactions with the patients who sense the caregiver’s response but do not understand it. Caregiver education about the behaviour of dementia patients is an essential component for effective care. (See: How dementia impacts behaviour)

Plan for caregiving. We need to plan how we will handle the patient in the current state, while also anticipating how we will continue to provide care as dementia worsens. Caregivers need to remember to pace themselves for providing long-term care that may span several years. Caregiving becomes more intense as dementia worsens, and if we burn out because we do things at an unsustainable pace in the beginning, we will not be physically and emotionally in a position to care for the patient when the patient needs us most.

caregiver negotaties with boss to work from homePlanning for caregiving includes redesigning life to incorporate our caregiving responsibilities. Often, dementia patients cannot be left alone because they tend to harm themselves and cannot perform necessary activities by themselves. We therefore need to ensure someone is with the patient. This could mean employing help (full-time, or at least for the day hours when we have to go for work).  Or we may need to use day care services. We may need to shift to jobs that allow flexi-time. Travel needs to be reduced and work-from-home packages may be evaluated. If we are confined to the house most of the time, we also need to plan better for outside activities like bank visits, ATM withdrawals, and shopping for groceries and vegetables. Socializing and vacations could become difficult.

Planning also includes setting up systems to support us in our caregiving. It helps to consider scenarios of possible problems and decide what to plan for. For example, a first aid box at home is a must. We should be easily able to find important phone numbers, such as the numbers of ambulance services, doctors who do home visits, home nursing agencies, chemists who deliver drugs at home, and relatives and friends to contact in case of problems. We must plan how we will transport the patient to clinics/ hospitals for checkups and emergencies. We must be ready for emergencies. Dementia patients usually find it intimidating to visit hospitals and clinics. They get confused by questions posed by doctors, and therefore give incomplete, wrong, and contradictory answers. Unfortunately many doctors don’t know how to handle dementia patients and may believe the wrong data given by the confused patients, and so caregivers need to be ready for such a situation. It is helpful to have a doctors who know the case history. Home nursing services may be used to avoid the trauma of hospital visits to the extent possible.

We also need to examine changes to be made in the home. Dementia patients often confused and intimidating by their surroundings, and some changes at home could reduce their confusion and anxiety. (such changes are more difficult if we live in a small house, and there are many members in the family)

While planning, we must involve other stakeholders, such as siblings, children, other family and friends, even if they live as a distance. Planning should ideally be a family activity, with everyone understanding dementia and caregiving, and jointly evolving a way to share the work and the financial impact. Agreement is also desirable on handling the advanced stages of dementia, because patients cannot understand their situation or decide between options, and this phase often requires difficult decisions on things like aggressive treatments and tube feeding.

Learn caregiving skills. Care for the patients involves physical support for various activities, as well as handling emotionally upset patients. Caregivers need to learn how to communicate with the patients, and how to provide the required help for daily activities while also helping the patient to remain independent to the extent possible. Often, patients behave in ways that can harm them or people around them–they may get aggressive, or tend to wander, or say hurtful things, or neglect themselves. Caregivers need to know how to handle challenging behaviour, or they will be stressed and the situation will deteriorate.

Caregivers need skills appropriate for the relevant stage of dementia. For example, for the late stage, when patients are bed-ridden, we need to learn home nursing skills such as how to change a soiled sheet or recognize and prevent pressure sores.

The caregiving skills required for dementia patients are extensive because we have to handle the physical part of caring as well as deal with a patient who cannot understand us or cooperate with us. It is helpful to consult support groups, other caregivers, and doctors to understand which topics are relevant, and to get the required information. We can also read books and watch training videos. (See: Caregiver Essential Toolkit)

Understand the physical exhaustion involved. Looking after a dependent but uncooperative (because he/ she does not understand) patient is often physically extremely tiring. It has been likened to a 36-hour job. Many caregivers are surprised at how very tired they get. If physically unfit ourselves, we need to take this into account while deciding between care options.

Be prepared for social isolation and embarrassments. Dementia patients forget things. They may forget, for example, that they have eaten their food. Patients get suspicious and paranoid because they forget where they have placed things, misremember facts, or misinterpret what they have heard.  They may therefore complain to others that the caregivers are starving them or torturing them. They may even accuse caregivers of stealing their money/ property, or even poisoning them. This is embarrassing and hurtful. In some forms of dementia where disinhibition is a symptom, patients may behave in socially unacceptable ways, including undressing in public or making sexual advances. Or they may laugh at a funeral or yell at someone. This sort of behavior can be particularly problematic because people may not understand that it is being caused by a disease. Creating a support network that knows of the problem and explains it to others may become very important in such cases.

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

As awareness of dementia and its impact on behaviour is poor in India, we have to spread awareness of the patient’s condition within the family, and with neighbours and acquaintances. It is best to use authoritative literature for this, as people may not believe what we tell them, assuming we are hiding our misdeeds and neglect. When criticized, we can try to explain the situation calmly, or excuse ourselves and walk away instead of exploding, because that always makes everyone feel worse. Making others assist us in some activities may also sensitize them to extent of caregiving.

Recognize the emotional demands of caregiving. Caregivers for dementia patients see the patients lose their memories to a point where patients no longer remember the shared past, and over time stop recognizing the caregivers. The patients, unable to comprehend the nature of dementia, are often resentful of the caregiver instead of being appreciative. They are frustrated by their inabilities, and often withdraw or get agitated. Their personalities may change; they may become apathetic or abusive. All these can be heart-wrenching for caregivers.

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

As the patient’s condition gets progressively worse despite our efforts, our emotions may range from guilt, helplessness and sorrow, to resentment, anger, and frustration. We are emotionally affected if we love the patient, because of our sense of helplessness and loss. Even if we are not emotionally attached to the patient, we get affected seeing the impact of the illness. Sometimes, we may have unresolved issues with the patient, and this creates resentment when we need to keep adjusting our lives to care for this person. We must understand that this is normal for caregivers, and not blame ourselves for these feelings.

We will experience good days and bad. On some days, we find caregiving fulfilling because the patient shows improvement, or he/ she smiles at us. On other days, the patient worsens, or is cranky and blames us or complains to others or gets agitated, and life seems just so pointless. We have been working very hard, and this discourages us. What we must remember is: a patient feeling worse on some days is not our fault; it is the nature of the disease. (See: Caregiver emotions and stress)

 

Use support groups and various facilities available. Caregivers, busy with fatiguing work, often get socially isolated and feel they have nothing in common with old friends. Support groups are very effective in reducing loneliness, as are online communities. To reduce our overwhelm, we must consider employing attendants and home nurses, availing day care facilities, or taking a vacation by using respite care. If balancing caregiving with our other roles proves impossible, we can consider options like moving the patient to a long-term care facility or hospice. Counselors can discuss the pros and cons for such steps.

Nurture oneself. Fatigued caregivers often neglect their own health and well-being, and suffer from episodes of caregiver stress. But in order to take good care of the patient, we must remain healthy and cheerful ourselves. For this, we must take time to indulge in whatever relaxes us: walks, music, a good book, painting, maybe an outing with a friend. We must eat nutritious food and remain physically active. Yoga and meditation also contribute to health and well-being. Even so, some days are especially stressful, and we must recognize when we are feeling stressed so that we can call for help in time. A stressed caregiver cannot handle 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, taking care of ourselves is very necessary. (See: Caregiver emotions and stress)

On a final note. For every caregiver, the journey of caregiving is unique and personal, and everyone handles it differently. However, dementia caregiving involves entire families, and if done by sharing concern with compassion, it can bind the family and strengthen the values the children inculcate.

Some caregiving situations are extremely challenging, especially when they involve severe financial setbacks, major personality changes, and strenous physical caregiving without any supportive systems for relief/ respite/ assistance. Just getting through each day is an achievement in such cases, and every possible tool or tip is valuable because it may make surviving possible. Knowing that we are doing the best we can is also a consolation.

But fortunately, in most other situations it is possible to adjust to caregiving and find our pace and balance. It may not seem possible in the beginning, but caregiving can also have some very beautiful moments, and if we plan and adjust to the role, we may find that caregiving adds a meaning to life in a dimension we do not usually notice in our busy lives.

Many of us may experience heart-warming moments when the patient flashes a smile at us, or when friends and relatives appreciate our effort. We can cherish these memories and use them to tide over days when things seem to go wrong. We can think of these moments when we are emotionally distressed by the caregiving work, or fatigued, or when we feel isolated, and when people around us ignore us, take us for granted, or criticize us instead of appreciating us. We can remind ourselves that caring for people is important. Definitely, we would like to be cared for when we need it, as will every person we know. We are multifaceted persons performing a very necessary role, the role of caring, and we can appreciate ourselves even if others do not.

[Back to top]

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 (PDF files) are available:

Some relevant interviews on this site:

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

[Back to top]

[This page was last updated in April 2014]

City/ region wise resources

City/ region-wise resources for dementia care: Bangalore, Mysore,   Chennai, Coimbatore,   Guwahati,   Hyderabad,   Kolkata,   Manipur,   Pune,   Delhi,   Goa,   Kerala cities,   Mumbai,   Others Also: Resources across India and Informational websites.

Extensive blog on dementia care

Swapna writes blog Swapna Kishore writes about her personal experiences of caring for her mother, and also shares observations as a resource person for dementia care in her blog here.