Dementia goes on for years. Caregivers need to support the person with dementia all through. Caregivers also have other roles and responsibilities to handle.
What caregivers can do: Understand how dementia will impact the person and other members of the family. Decide what they need to learn for the caregiving. Understand what the care work is and how it will change as dementia progresses. Look at their other responsibilities also. Think of adjustments they may have to make. Decide how to balance dementia care with other responsibilities. Try to enjoy what is possible. Get fulfillment from the caregiving. Keep stress low.
- The aims of good dementia home care.
- Essential understanding: Dementia’s impact on abilities, emotions, and behavior.
- Support the person with dementia.
- Keep stress low and also manage other responsibilities.
- Summing it up.
- See also….
Dementia home care faced additional challenges during the pandemic, which changed how families lived and affected everyone’s daily routine. A special page that discusses care during COVID is at Dementia Home Care during COVID – Infection Risk, Vaccination, Care Approach. Additionally, comments and tips based on lessons learnt during the pandemic are included in various caregiving pages of this site.
Caring for someone with dementia is very different from living with normal elders. Family members have to support the person and also handle other work and responsibilities.
Dementia home care aims at:
- Supporting the person with dementia: Persons with dementia are given suitable care and support. Care aims at person’s well-being, safety, and comfort, while also helping persons feel as capable and independent as they can. In the early stages of dementia, the symptoms are mild, like mood disorders, confusion, memory loss, and strange behavior. But the person’s abilities keep getting worse. Towards the end the person with dementia becomes fully dependent. Suitable support has to be given through all these stages.
- Enabling family members to handle care along with other work, and with low stress: The family has to find a balance between handling dementia care along with all the other needs and responsibilities of various family members. Various family members have different needs and responsibilities, and all these also have to be handled in addition to the dementia care. Adjustments and plans have to be made so that various family members, including those directly caring for the dementia person, can find meaning and pleasure in care work and in the other aspects of their lives.
While dementia care involves effort and time and requires a lot of hard work, the idea is to find ways to do it with as little stress as possible.
To handle home care for someone with dementia, you have to appreciate the problems the person faces because of dementia, and how these will get worse over time. Only then can you start understanding what care will require, and thinking how you will handle it.
Typical informational material on dementia lists symptoms such as memory problems, problems understanding things, and confusion. You may read that dementia affects how persons can do tasks. Their emotions and personalities may be affected. You will read that these symptoms become worse over time and dependence goes up. Medicines can make a difference in some cases, at least in the beginning, but they don’t work for everyone.
But usually, just reading about dementia symptoms does not prepare families for the sort of changed behavior they see. Hearing and reading about these symptoms does not give family members an idea of how much a dementia disease may affect someone’s day-to-day behavior. So they get puzzled and hurt by many things someone with dementia does. Here are some examples of things that puzzle and hurt caregivers:
- I had told Appa not to go out and he agreed, but the moment I turned back, he opened the door and walked out.
- Why doesn’t Amma understand! I have explained this to her hundreds of times!
- I bought him a new mobile but he doesn’t use it.
- Appa remembers his childhood so well, how can he say he doesn’t remember our Mumbai trip.
- Amma lied to the neighbor and said I didn’t get her sari ironed.
- My husband just doesn’t care any more. He was laughing that day at the funeral. I was so embarrassed.
Yet all these are to be expected if family members truly appreciate how dementia affects persons. After all, these persons are just having problems remembering and understanding things, which is a typical symptom of dementia.
The lack of understanding of dementia’s impact is that family members don’t think of the changes they need to make to support the person. For example, they usually do not change how they talk to someone with dementia. They do not think that because the person is having problems, they should talk and explain things differently. They may give lengthy explanations and ask complicated questions that people with dementia find difficult. Family members also do not change what they expect from the person with dementia. They want the person to socialize and handle new situations. They want the person to take decisions. If the person makes mistakes or gets frustrated or angry, family members feel the person is not trying hard enough.
Basically, family members know the symptoms of dementia as a list, but fail to understand the true effect on the persons all day long. This means that even if they read that dementia care lasts for years and is tiring, they don’t truly appreciate what this would mean for them. They underestimate the work and the fatigue they will have, and don’t think much planning will be needed. They think they will be able to handle it a day at a time, and don’t think it could be much different from normal living with healthy seniors.
For effective home care, you have to understand how much dementia affects the person all day long, in many ways. You have to appreciate the difficulties the person faces, and how much behavior may change. Only then can you get a good understanding of what home care will require, and how you can handle this along with other work you have to do. A good understanding of dementia is a turning point in planning and providing good care.
Here’s what you can do: read about dementia. Read how it affects behavior. Read stories of persons with dementia. Many persons with dementia have written about how it is to live with dementia. Read these personal accounts. Read books and interviews where caregivers share their personal experience. All these will help you appreciate what it is like to live with dementia.
Try to become more sensitive to the problems of someone with dementia. Think of how each part of the brain performs some function. Then imagine how atrophy or damage of that part could impact the person.
You can also use “thought experiments” to deepen your understanding of dementia. For example, imagine the following scenarios.
- You are in a room and you have forgotten why you are there and who the people around you are. You want to go home, and these people say you are already at home. But this is not your home.
- You know the person in front of you is a close relative, but you cannot remember who she is.
- Frightened that you are alone at home, you call up friends. Your daughter gets angry and says she had told you she was going out for just ten minutes. You don’t remember any such thing. She must be lying.
- You can’t understand how the new mobile works, but your son has taken away the old mobile.
- Wasn’t the kitchen to the left of the bedroom? What is this new machine here?
- There are faces around you, but you aren’t sure what their expression means. Somehow you don’t seem to care any more.
- When you want something now, you don’t see why you can’t grab at it and take it.
Now imagine living this way 24×7, with no hope that things will improve.
Whenever you see some changed behavior, try to see how this may be related to dementia. Your understanding of dementia’s impact on the person will grow with observation and experience. It will make a huge difference to how well you accept the situation and then take care of the person. It will affect your emotional state and also that of the dementia person.
This includes planning for care, providing the actual care, and continually adjusting the care as the dementia worsens and the person’s abilities reduce. Broadly, this includes:
- Get ready for caregiving and set up the care environment.
- Provide care and adjust it continually.
- Ensure care includes the person’s well-being, safety, and comfort.
There is no medicine that can cure dementia. It is not even possible to slow down the disease causing dementia. Some medicines provide some symptom relief. For some persons, the relief can be significant, especially in earlier dementia. But medicines do not work for all types of dementia. Also, they may not work for many persons with dementia, or may cause unacceptable side-effects. So they are only part of the possible approach. The person’s well-being and the entire surroundings around the care depends on how well you understand the situation and cope with it. Dementia care will go on for years. So it is worth spending some effort to prepare yourself for caregiving. This includes:
- Understand the home caregiver’s role: Caregiving for dementia will need a lot of time and energy, and will affect all areas of your life. It is, therefore, critical to understand what the role is and what you need for doing it.
- Plan care across the years: Care has to keep changing as the dementia gets worse. You need to know the stages of dementia and to know what sort of changes to expect. Care will go on for years and keep increasing over time. So you have to plan for it, including discussing with family members. If you are at a distance, you have to see how to manage care remotely.
- Create safe environment for the person with dementia: If the persons with dementia feel safe at home and can easily move around and use objects, they are happier and feel more capable. They are less stressed. Chances of accidents reduce. One part of care is seeing what sort of changes at home can make life safer and easier for someone with dementia.
- Learn essential caregiving skills: People with dementia find it difficult to understand others or explain what they want, and they begin finding normal activities difficult. Therefore, you have to learn how to talk to them and help them. Their behavior changes because of the changes in their brains and also because of the problems they face. Caregivers have to know about changed behavior and how to cope with it and help the person. This includes some especially challenging behavior like wandering, incontinence, repetitions, sundowning, etc. Towards the later stages of dementia, the person’s dependence increases a lot, and many additional skills are needed, such as care for someone who needs help for every activity and may not be able to walk around or express their needs. The home will need to be set up for such care. Relevant skills also have to be learned for care for late-stage dementia.
- Learn the importance of meaningful “activities”: You can improve the quality of life of someone with dementia using many things like simple conversations, fun-filled activities, and talking together of old times. Such activities create a happy and relaxed atmosphere and reduce stress for you and the person. You can see your work to help them as two broad categories.
- General ways to improve the life of the person with dementia: These are changes you make to create a easier and more fulfilling life for the person. For example, when you adapt the home to suit someone with dementia, you are providing a setting where the person feels capable and safe. When you talk in ways the person can understand, you are making sure the person feels connected with you. When you give the person just the right amount of assistance in a task, you are making the person feel capable and independent. Such general ways make sure the persons with dementia do not feel alone or inadequate. You may also add meaningful, fulfilling activities in their daily routine. All these ways can improve their well-being and participation, and add to their positive emotions.
- Targeted ways to help in specific problems: These are things you need to do for particular situations and problems, such as when someone with dementia may get very angry or may withdraw or wander. Here you have to look at what the problem is, why it is happening, and how you can reduce the chances of it happening. You have to try out some changes to reduce the problem, and adjust these changes till you solve that problem.
In the beginning, as you start getting used to caregiving, it may seem to you that there are many areas where you have to solve problems. But as you increase general ways to improve the life of someone with dementia, you will find that the specific problems you need to solve through targeted approaches will reduce. The person is feeling more comfortable and less stressed, and so are you. Worrying behaviors go down. You also understand the effect of dementia better and so you find better solutions for problems.
The care approach has to be continuously adjusted based on the impact of dementia on the person. One very important thing is the daily routine of the person. A good daily routine includes daily living tasks, enjoyable activities, and relaxation. Most persons with dementia like to have a daily routine because it reduces uncertainty and change. They enjoy variety, but only in small doses that don’t stress them. Use the person’s response to the routine to decide if you need to adjust the routine. Stay alert on the person’s changing abilities.
In spite of your best effort, the person’s abilities reduce over time. Be emotionally prepared for this. Keep adjusting your way of caring to match what the person needs. Note that care changes as dementia progresses (stages of dementia), and you must adjust the home, and the way you provide care accordingly. Caregiving requires creativity and continual adjustment to the situation.
As mentioned above, appropriate care can be used to improve the well-being of people with dementia. They feel better if they feel capable of doing things, feel valued, and can do meaningful things. They are happier and things are also more pleasant for the entire family. The worrying behaviors reduce. Have a suitable daily routine for the person and include meaningful and fun-filled activities in it.
In many countries, where care is provided in facilities, the staff may view people with dementia in terms of their illness and lost abilities. They may not see them as individuals. Care may be a matter of applying techniques using some agreed standards. It may lack a respectful, dignified, person-centered angle. Staff sees them only as a “patient” and not as a unique individual with their qualities, likes, dislikes, needs, etc. Care models, therefore, often emphasize the need for person-centered approaches that value the personhood and dignity of the person with dementia.
In India, typically care is provided at home, with tasks done by (or supervised by) family members who have known the person from times before the person developed dementia. Caregivers are familiar with the person’s history and background, likes and dislikes, etc. Once they accept the impact of the dementia disease, they are able to re-establish their connection with the person. Many families, after initial glitches, experience satisfaction in caregiving, and have many shared moments of joy. The persons with dementia are also more content and fulfilled. The family is able to accept the fact that they have a medical condition (and is therefore a “patient”) while also valuing and interacting with the person as a unique individual whom they have known for years.
This includes ensuring that caregivers are not too tired or stressed, and that they balance care work with other roles and responsibilities. This is often not fully possible, but the idea is to do it as well as possible. Broadly, this includes:
- Get help from family, from people around you, from paid services, and from various systems.
- Remain healthy, emotionally comfortable and reasonably stress-free.
It is extremely difficult to handle all the dementia care work without any help. In the beginning, many caregivers don’t realize they will need help. They do not stay connected with others. When they start getting tired and stressed, they don’t know how to start explaining the situation to others and where and how to get help.
You need to keep all concerned persons informed and involved in the dementia situation right from the beginning so that they can participate and help when needed.
Involve your family in the planning and caring. This is not just the family members living with the person with dementia, but also family members living separately, maybe in another city or country. Make sure all family members know about the situation and understand it enough to participate in the planning and decisions, and can share the work and costs to the extent possible. If the rest of the family is not informed or involved, there can be major misunderstandings and disagreements later. On the other hand, if the entire family is involved, the responsibility and work can be shared, and the care is somewhat easier. If some family members are in another location, you need to especially plan for “long-distance caregiving”. Care from a distance for someone in India is very challenging because of the lack of good and reliable support systems and services.
Look at all sources of help. Look at friends, relatives, neighbors, colleagues, and ex-colleagues. These persons may not realize you need help, but there are many types of activities where they can help. How to get help and what sort of help you can get will depend on the potential helper. Some persons may know about dementia and care, and can help you with many care tasks. Others may not want to help with care-related tasks but may help with outside errands like shopping. Care shall go on for years and can be very exhausting. Knowing how to ask for help and use help is very important to avoid burn-out.
Look at all types of available services. Some services allow home-bound caregivers to manage things without leaving the house. Some pharmacies deliver medicines at home, some pathology labs take samples from home, some grocery shops do home-delivery. Banks and shops may have online services. There are also some services designed to help in dementia care. You may also find it useful to contact support groups and counselors. Many families also look for trained attendants. Getting suitable, reliable, and well-trained care assistants (trained attendants) or good dementia-related services and facilities is very difficult in India, so families have to be creative in how they use available services and train them for dementia. For example, families find ways to train normal home care help and services to help them with the dementia persons, but this needs a lot of caution and effort. It involves evaluation of services, constant vigilance and monitoring, suitable training and guidance, and so on.
Dementia caregiving is considered the most stressful type of caregiving. Care responsibilities keep increasing and take up a large part of your day. They will affect all areas of your life: career, social life, family life, finances, and leisure. You need to avoid stress and breakdowns.
Caregivers usually do not plan for self-care in the beginning. Over time, more and more of their time and energy gets used for care-related work. They are then too tired to think of self-care and nurture. In India, substitute caregivers and respite care are very difficult to arrange. So it becomes even more difficult for caregivers to take a break.
Plan for self-care as early as you can. See how you can meet your daily needs even when home-bound and fully busy with care work. For example, look at home delivery of food, provisions, medicines, etc., or other deliveries. Think about your health, an area many caregivers neglect. Consider how you will make sure you do your medical checkups and doctor visits. If you are home-bound, find out about doctors who can come home to check you when you are not well. See what you need to remain fit, and how you can take daily walks or do exercises at home. You may need to plan and set up things for this, like purchasing exercise mats, hand-weights, stretch bands, exercise music, etc.
Also plan for the financial and legal side. Look at things like investments, power of attorney documents, or other legal documents that are in the name of the person with dementia, and may now need to be changed. You may not even know about all these. You will need to find out and then act.
Stress and burnout is common among caregivers. You may not notice the warning signs and push yourself even more. Be alert about this and try to nurture yourself even while providing suitable care. You may not be able to use the typical methods of relaxing. Long vacations may not be possible, outings with friends are difficult to arrange, social circles are smaller. Find new ways to care for yourself. You may find this difficult and feel you can no longer enjoy anything. Consider:
- Reduce/ share care-related work by using systems and support around you (see section above.)
- Take small breaks to squeeze in activities that increase your well-being.
- Find more satisfaction in care-related work. You may be so overwhelmed that you do not realize that caregiving itself can give you fulfillment if you go with the flow.
There are many activities you can do and enjoy even when your day is full of care-related work. Try and to have enough positive experiences which you can remember on bad days. This is like building up a bank balance of calm or fulfilling moments.
Pamper yourself in small ways several times a day. For example, listen to a funny song or read a book or take a walk or talk to a friend. You may not be able to see movies in a theatre, but you can see them at home on a streaming platform. You may not be able to invite people home, but you can meet them at the cafe around the corner. Such breaks may ensure that your fatigue and desperation does not build up.
Caregiving can have many fulfilling moments if you accept the realities of dementia and consider your role useful and productive. The role includes a lot of management and creativity. Learn to value your work and feeling good about it, even if others do not value you.
Time spent with people with dementia can be very fulfilling. They may have forgotten many things, but they are usually capable of happy emotions and the joy of sharing. Spend relaxed time with them. Sit with them and watch children play in the park, or listen to old music together, or look at old albums or play board games. It does not matter if they don’t remember the rules of the games; let go of your expectations and have fun.
The idea is to enjoy what is possible while providing care, and to flow with the events. By sharing happy times with the person with dementia, you will find you are more willing to do care tasks. The person is also more relaxed with you. Don’t fill your day with attempts to make the person with dementia to do things or improve. Try a more relaxing approach. A family that cares together for someone with dementia may be able to bond because family members share both work and fun times involved in the care.
Dementia care stretches over years. Effective dementia home care requires understanding and skill and making adjustments repeatedly. To achieve it with minimal stress and convert it to a fulfilling activity, you need a better understanding of dementia. You need to value your caregiver role and accept the flow of things. You need to find new and fulfilling ways to stay connected with dementia person spite of their decline. You can find a balance in the caregiving approach once you drop expectations and frustration. That lets you do what is needed and even be creative. It will be tiring at times, and also overwhelming, but it will also give you happy times to remember. You will have the satisfaction that you did the best you could for a person who needed it.
The topics discussed above have been detailed on several pages of this website, as detailed under:
For an overview of dementia and its stages:
To understand how dementia affects someone’s emotions and behavior, read: How dementia impacts behavior.
For care related discussions, see:
- Understand the caregiver’s role.
- Plan care for various stages of dementia.
- Adapt the home for dementia patients.
- Caregiving Essential Toolkit.
- Improve the patient’s quality of life.
- Coordinate caregiving between family members.
- Caregiver emotions and stress.
- How relatives/ friends/ colleagues can help.
- Long-Distance Caregiving for Dementia Patients in India.