What caregivers can do: Understand various arrangements for using trained attendants. See what suits the patient and family situation. Explain the patient’s care to the attendant. Set up your home for the attendant’s presence. Take safety measures. Supervise attendants and use them effectively. Handle their absence and other problems.
Many families feel they need a good attendant once the patient needs more attention and the care work gets tiring. They look for ayahs, maids, servants who can be trained, attendants hired from agencies, etc.
But it is difficult to get good attendants. The few available attendants do not understand dementia, or are unreliable. Families also face problems trying to arrange their home to use attendants effectively.
- See whether you need to consider trained attendants.
- Locate sources for trained attendants.
- Check if the attendant is suitable.
- Explain patient care to the attendant.
- Make adjustments for the attendant.
- Ensure safety and security.
- Supervise and support the attendant.
- Handle the attendant’s absences.
- Summing it up….
- See also….
In the initial years of dementia, patients are active and need only some help. They need more help when they start having problems doing normal tasks. They may make harmful mistakes. They may leave the gas stove on and let food burn. They may forget to eat, miss their medicines, or wander.
The patient’s decline is often gradual. Families usually realize that patients need more attention and care only after facing some major problem. A typical incident is that the patient wanders or has an accident.
Some questions to help you think whether you need an attendant:
- Can the patient handle normal activities without help? List what you expect the patient to be doing alone. Then check how well the patient can do these tasks.
- Does the patient need frequent reminders for normal things like eating food, having a bath, washing hands, etc.?
- Does the patient do things that may cause harm to self or others? How bad is the patient’s confusion? How much has the ability reduced? How fast is it getting worse? Do patients wander off? Do they take off warm clothes in winter, or bump into furniture or fall often? Are they violent?
- How much time does the family spend to help the patient? Can the patient be left alone, or does someone always have to be with the patient?
- How do you balance dementia care with other work? Is the dementia care work causing you to neglect other important work? Are you having problems fitting all you need to do into your day? Maybe there are not enough persons in your family to do all the work needed. Maybe staying at home all the time for the care makes it tough to do outside work and errands.
Maybe you cannot find practical ways to take care. Or maybe you have to cut down on essential tasks or your career for taking time for caregiving. Or the care work tires you physically or emotionally. In such a case you may need to think of some part-time or maybe full-time help. Keep checking the patient’s state and how you are managing the care workload to see if you need a helper.
The type of paid help to employ depends on multiple factors. Examples are availability, cost, patient’s needs, family comfort, and so on. Often, people use the term “nurse” for the person they employ, though the person is not a medically trained nurse. Types of arrangements that families consider are:
- Using a maid/ ayah/ servant (part-time or full-time) after providing them some training.
- Using a part-time trained attendant for the day (a 8 hour shift, or a 12 hour shift).
- Using a part-time attendant for the night (typically a 12 hour shift).
- Using two part-time attendants, one for the day and one for the night.
- Using a full-time attendant who lives in the home.
- Using qualified nurses part-time in one or more shifts.
Many families look at the home help first, like a maid or ayah or servant. They may already have a home helper they know and trust. This home helper already knows and respects the patient and so they feel this maid will be considerate and affectionate. The main problem here is that the family has to train the maid themselves. They have to explain dementia to the home help. They have to explain how to interact with the patient and handle odd behavior. Home help have no medical knowledge. They may have seen persons with dementia symptoms being treated as unreasonable or “mental” in the society around them. So they may not believe that changed dementia behavior is because of a medical problem. The family may not know how to explain or convince.
Often, families use agencies or services that provide attendants for home care. These attendants may be trained to handle frail or elderly people. But they usually do not have sufficient training on dementia. Families usually need to train agency-supplied attendants for dementia care.
Most families opt for part-time or full time trained attendants from agencies. Some employ only a day-time part-time attendant and do the night-time caregiving themselves. Some families use two attendants, one for the day and another for the night. Others prefer a full-time live-in attendant.
Employing a full-time attendant means that the family has to provide meals and enough living space. This is a problem if the family lives in a small apartment, or if they do not have a cook. Most agencies say that attendants will not help in any housework. In families without servants and maids, the family then has to cook for the attendant. Often the attendant’s food habits and choices are not the same as that of the family. So the family has to make separate food that the attendant likes, or there is a risk that the attendant will be unhappy and will leave. Some families handle this by using a “dabba” service to get food the attendant likes.
A full-time attendant may not be able to handle all the work if the patient attention both at day and at night. There is also a problem in case this full-time attendant falls ill. When the attendant falls ill, the family has to take over all the dementia care work and also has to decide whether to send the unwell attendant away or to look after the attendant. If the attendant was sharing the room with the patient, an infected attendant may pass the infection to the patient. Also, when full-time attendants have to leave suddenly, such as for a personal emergency, the family has no alternate help till the agency can find a replacement.
Using part-time attendants (either single or two) is another option. This saves the family the additional work of cooking for the attendants. Part-time attendants are supposed to bring their meals and the family only has to give them tea and maybe snacks. No separate, private sleeping space is needed. The attendant spends the day (or night) with the patient. Two attendants, one for the day and one for the night, is one arrangement many families use, Often, agencies agree that the attendant on duty will continue on the shift till the next shift’s attendant comes for work.
While deciding on whether to employ full-time or part-time attendants, look at the rest of your home helpers (maids, drivers, and cooks) to see if they can help if the attendant skips work.
One very important factor is how the dementia patient adjusts to the arrangement. Patients may not be able to adjust if the day and night attendants are different. This is especially true if the two attendants have different ways of helping the patient.
You also need to decide whether you need male attendants or female attendants. Female attendants are used for female patients. But for male patients, families may use female attendants or male attendants. In homes where most family members are females, the family feels more comfortable and safe if the attendant is also female. But there are also other things to consider. For example, can the female attendant do the physical work required? Can she lift and turn the patient? Is the behavior of the male patient towards the female attendant alright? In some forms of dementia, patients are aggressive and abusive and may behave in socially unacceptable ways. They may make lewd comments, grab, or try to kiss. In such cases using a female attendant could be a problem, and may need additional caution.
While looking at the overall costs of the options, do consider food and other living costs for full-time attendants.
Very few patients need a qualified nurse as a caregiver. A trained attendant with basic medical knowledge is enough for most of the care work. Employing a qualified nurse for home care is very costly. Also, qualified nurses would find the day’s work boring and a waste of their skills. In case there is an occasional injection or some other medical procedure to be done, families can ask a home nursing agency or nearby polyclinic to send a qualified nurse for that work. If the patient needs proper nursing care for some days, families can use a qualified nurse for those brief periods of severe illness.
Trained attendants (part-time or full-time) and nurses are usually employed through agencies. Some families employ attendants directly instead of getting them through agencies because it costs less. However, this private and direct arrangement becomes a problem if the attendant does not come on one day. If the attendant is being supplied by an agency, the agency is supposed to send a replacement.
Agencies bill the family for the work. They pay the attendant a salary after deducting their commission. Commissions agencies take vary widely. They may be as low as 500 rupees a month or as high as 50% or more of what they charge the family. The agencies are supposed to ensure that the attendants are “trained” and “reliable.” But they don’t treat this as a contractual obligation. The quality of agencies and the attendants they supply varies widely. Agencies and attendants often overstate their experience to get a job.
Agencies are supposed to send substitute attendants when the assigned attendants go on leave. Some agencies do so. But many agencies ask the families to “adjust” for a few days. Some agencies keep expressing their inability to provide attendants, but they do not refund the deposit given to them. It is advisable to check the reputation of the agency. Ask others who have used that agency for some care work, even if that wasn’t dementia care.
Some tips to locate trained attendants/ agencies:
- Ask families who have had convalescents at home, such as someone with a fracture of a serious illness.
- Call up the elder helplines of the city
- Check with the desk of a good hospital/ nursing home. They often have agency names because families often need attendants for patients being discharged from hospitals. Orthopedic and cancer hospitals are likely to have such contacts.
- Many large pathology lab services know about nursing bureaus and attendant service providers. Neighborhood path labs and small clinics may be able to send nurses across for some procedures, like IV.
- Search on the internet or use city helplines for nursing bureaus. Most of these provide nurses as well as attendants.
- Obtain a list of local services by surfing the Internet using keywords and the name of the city, such as “home nursing Bangalore”, “dementia care Bangalore”, “old age homes Bangalore.”
- While searching online, try out various versions of the city name in searches, such as Bangalore, Bengaluru, Bengalooru. So, a search could be “old age homes Bangalore” or “dementia Bengaluru” or “nurses Bangalore” or “home care Bangalore”, etc.
- Online city directories may have some information.
- City telephone enquiry services (like Justdial and Askme) may have some information.
- If you have a name but the contact number or address seems to have changed, try to get the latest data using local telephone inquiry/ assistance services or services like Justdial (0888-888-8888) and Askme (0444-444-4444).
Whichever source you use, you need to be very careful about the quality and skills and character of the person you employ.
Attendants have to handle many tasks for patients. Here is a tentative list of things to consider:
- Should read enough to understand instructions, notes, and medicine labels. Should write enough to note down readings and important observations.
- Should understand hygiene for self and for the patient, such as the need to wash hands, basics of infection, cleaning, etc.
- Should understand the importance of following the doctor’s instructions on care. While families are supposed to handle the medication, attendants may be sometimes needed to help with giving medicines and putting eye drops, etc., so those are useful things to know.
- Should be able to help the patient with daily activities like bathing, toileting, walking, sitting up, eating, and diaper change. May have to help with non-nursing parts of enema, catheter-related work, and other personal activities.
- Should know first aid.
- Should be alert about medical problems and report them in time.
- Should know about bedsores and know how to avoid them.
- Should be able to accompany patient for visits, such as outings or doctor visits.
- Should understand modern appliances and medical equipment to the extent needed for patient care and comfort.
It is preferable if attendants are trained for dementia care. Agencies often claim the attendant they are sending has been trained for dementia. But families usually have to do much more to make sure the attendant understands dementia and can handle the patient’s care.
The personality of the attendant matters a lot. Ideally the attendant should be honest, empathetic, reliable, and responsible. The attendant should be alert and willing to adjust. An attendant with a calm and pleasant personality is better for dementia care.
If possible, contact the families the attendant has worked for previously. Verify the claims and learn more about the personality of the attendant.
Attendants are expected to do all the work required for patient care. This includes walking them, feeding them, handling their bath and toilet and other hygiene needs, and doing activities with them. They are expected to wash soiled clothes. They have to keep the patient bed and area clean, including the bathroom that the patient and attendant use. They are expected to heat the patient’s meal and serve it. But they are not supposed not cook the meal (except maybe tea). They are usually not supposed to do any housework. They cannot be asked to clean the house, or help in shelling peas or cook, or clean utensils, even if the other household help does not report for work. They cannot be sent out for shopping. For full-time attendants, meals and enough space and privacy have to be provided.
The contract includes the amount of leave the attendant can get. This is relevant only for full-time attendants. For example, some agencies require that attendants are given a half-day every week when they can go out or relax.
The above is an indicative list. Discuss the tasks with the agency before employing the attendant. This will avoid misunderstandings. Note that, regardless of the agency contract, some attendants are happy to do some additional chores on payment. They may also make other adjustments for mutual convenience.
The attendant has to understand how to help older persons, and know first aid and basic care skills (see previous section).
Maybe the attendant you get has been trained for caregiving. The attendant may also have been trained for dementia. But this is not enough for the attendant to care for your patient. You have to explain the likes and dislikes of the patient to the attendant. Each patient has certain habits and needs to be helped in some particular way. You have to teach the attendant how to help the patient with each task. The attendant will also need to know how things are done at your home. To know what to teach the attendant, find out what they know and teach them whatever else they need to know.
The attendant must truly understand dementia. It is not enough for them to know that dementia means “memory loss” or “confusion.” The attendant must realize that the patient’s abilities are reduced and that dementia affects behavior in many ways. They must know how to talk to the patient and understand what the patient wants. They must know how to help the patient in various tasks.
Make sure the attendant does not think dementia is just a form of old age. Some tips for this:
- Give the attendant simple and reliable material that explains dementia. Show pictures of the brain changes and videos of dementia patients. Get material in the attendant’s language if possible. Pictures of the changes in the brain are very useful for explaining that dementia is caused by a medical problem.
- Take the attendant to a dementia day care centre or respite care. Ask the volunteers to explain dementia to the attendant. Let the attendant see the other patients.
- Make sure that the attendant knows basic things like how to talk to the patient, help the patient, and handle difficult behavior. Make sure the attendant understands how important meaningful activities and fun activities are.
- Use role plays and movies to help the attendant appreciate and practice necessary skills.
Many attendants claim they understand dementia but don’t actually believe it. They think you are making excuses for your parent’s odd behavior. It helps if you involve a volunteer in the training. When attendants get the information from others, such as in a day care center or from pamphlets issued by an organization, they are more ready to believe that the patient’s problems are because of an illness.
Every patient is different. Even if the attendant has worked with dementia patients before, adjusting to the new patient may take time. To prepare the attendant for your patient, you have to give detailed explanations. Examples:
- For each activity (such as bathing, going for walks, eating, dressing), explain how the patient likes things done. Explain with actions where necessary.
- Tell the attendant about any actions or words that make the patient angry or scared.
- Tell the attendant of any words the patient uses to mean something different from what people normally use the word for.
- Explain the patient’s likes and dislikes.
- Share tips on how to know if the patient is getting upset.
- Explain which situations cause difficult behavior and how to avoid such situations.
Here is a document you can adapt and expand to explain things to attendants. The document includes pictures the attendant can be shown: Trained attendant orientation note for dementia care (PDF file)
Many patients have confusions and delusions. Because of this, they often accuse persons around them. For example, they may accuse an attendant of bad behavior or theft. Reassure the attendant that you will listen to their version later. Explain to them that they should not tell you the patient is wrong in the presence of the patient. They should not argue or start yelling at the patient.
Attendants spend a lot of time in your home and assist in various tasks. They should be able to use objects in the house. You may have fancy bathroom fittings, gas stoves, geysers and TV remotes, and other equipment. They may not know how to use these. Tell them how to use them properly.
Make sure the attendant knows who to call in an emergency.
Families often do not think how their lives will change because of the attendant’s constant presence. Privacy gets affected. Things cannot be left around because they may get stolen. People have to be careful of what they say and do in the presence of the attendant. The girls and women of the family may be uncomfortable because a male attendant is always there. Children have to be kept safe.
Review the home to see whether some changes will make it easier to adjust to the attendant’s presence. Decide which objects you need to remove. Lock away valuables. See if some doors need latches for privacy. If the attendant will be living in the patient’s room, you may want to remove objects like private letters, diaries, and photographs.
Many families don’t discuss who will instruct the attendant. Different family members give conflicting instructions to the attendant. This causes confusion. One person may scold the attendant for doing something another family member told them to do. Families must decide who will manage the attendant’s work.
You may be having many employees who do work for the patient, like drivers, cooks, maids, and attendants. Decide who is going to do which task. Don’t confuse your staff by keeping on changing your instructions. Various employees may also compete and fight sometimes, and you need to make sure your instructions are clear and fair.
You need to ensure the safety and security of patients before you leave them alone at home with an attendant.
When you employ attendants, there is a greater chance of petty thefts. While some attendants are honest, many are unable to resist temptation. You can lock away some valuables, but not everything can be locked. Over the days, you may notice small objects vanish, like mementos, a clock, or a favorite pen. This is often unavoidable.
What is more important is making sure that the attendants and their friends and relatives don’t get tempted to rob your house. A bigger robbery may mean much more loss and could include physical danger to the patient and family members.
Try to make the house seem less tempting. Also, make attendants feel they cannot risk robbing you. For this:
- Make the attendant believe the house has no valuables worth robbing.
- Make sure the attendants know they are recognized by friends and neighbors of the family. Make sure they know that their contact information is available to many persons. That way, they know they can be located if they are suspected of robbery.
You can make the house less tempting in multiple ways. Do not let the attendant see you with large amounts of money. When asked for money, say you need to go to the bank. Do not pull out a bundle of notes from your wallet. Keep jewelry to a minimum. Do not take it off and leave in lying around. Remove objects that look like silver or gold. Look around your home and reduce or remove objects that could tempt an attendant.
Use several ways to tell the attendants that their picture and contact information (including village name) is available to many persons. Some cities have a compulsory police verification procedure. Some apartment complexes also have such procedures. You can also take a group photo with the attendant and let them know that you have shared this with friends. Keep a photocopy of the attendant’s identity papers, like driving license, ration card, or voter-id card. Note down the mobile numbers of all relatives of the attendant. Some families even install security cameras. Some cities have special neighbourhod watch schemes, and also schemes for enrolling seniors. Use such methods to make sure the attendants know they are easy to identify and find.
If you leave the patient and the house on the attendant, call home often and at random times. Use a video link if possible. Ask neighbours and relatives to visit now and then to peep in and say hello.
Attendants are doing a job. They cab switch jobs or drop out whenever they want. Some attendants are sincere and dependable, but others need not be. The family remains responsible for the care. You have to make sure the care happens properly.
Supervise the attendants. Attendants make mistakes because of ignorance. They get tired, careless, or stressed. They may not tell you about a problem if they think they will be blamed. For example, they may delay telling you about a bedsore the patient has developed. They may hide their mistakes. They may not realize that a problem is serious enough to call a doctor.
Clearly tell the attendants what they have to do. Also, be clear about what tasks they cannot do, and how those will be done. Decide how you will check the care work. Make a list you can use to supervise. For this, talk to your doctors and discuss with the family. Talk to friends who have handled similar caregiving.
You need to understand caregiving skills and techniques in order to check if the attendant is working properly. You will also need to take over the work or train a replacement if your attendant is absent. Often families avoid checking some tasks they find unpleasant, like the patient’s bath or toilet. Such neglect can be very costly to patient health. For example, a bath is the best time to check the patient’s body for wounds and sore. Attendants may not notice or report these problems. You need to check yourself sometimes. You should also insist that the attendant is more careful during such tasks.
The patient’s care changes over time. So attendants need to get more training. Your checklist also has to be changed.
Caring for a dementia patient means facing things like the patient’s withdrawal or anger. Attendants can get stressed when they see a patient lose memories and abilities. They feel bad if Amma understood something yesterday but now looks confused by it. They may think Amma is pretending or not trying hard enough. Or they may feel very sad about such day-to-day changes. When patients get angry with them, they may think the patient is being unreasonable. How you explain things to them and how you handle the patient’s difficult behavior will affect how attendants handle such behavior.
Make sure that the attendants have the confidence that you will be fair to them. When patients accuse attendants of neglect or theft, the attendants should know that you understand such accusations may be wrong. They should know that you will find out facts and be fair. Then they will be able to stay calm when the patient is yelling at them.
You need to support attendants even more if the patient’s behavior is abusive, or socially unacceptable. You will have to repeatedly explain how dementia affects behavior. Reassure them that the patient’s behavior is not directed personally at them. It is a result of the patient’s brain damage. Some patients pass lewd comments or make sexual advances. Make sure the attendant is not at any risk. Do not ignore any complaint by the attendant. Check facts and have safeguards. You are responsible for the safety and security of the attendant.
Make sure the attendants are comfortable and feel respected. Do things that make them feel valued, such as getting them magazines to read when you go out.
The most common problem faced is that the attendants come late for work, or are absent. Families are not able to get a replacement at short notice.
Some families use two attendants to handle this problem. They have one day-shift attendant and one night-shift attendant for care. They allow one attendant to leave only after the next one comes for work. Some agencies agree to this arrangement. This arrangement may not always work because an attendant may refuse to stay late if the next attendant had not come.
If you have many servants, you may be able to get some other servant to help if the dementia attendant does not come for work. You can ask the household maid, cook, driver, or even the lift-man of the apartment complex for assistance for some small tasks. Not all servants will agree, but some help for urgent tasks may be possible this way.
Anyone who helps the patient needs to know how to do the task. The patient may not cooperate, or may not be able to explain what she wants done. So you must know all the care-related skills so that you can explain them to replacement helpers if needed.
Some tasks cannot wait for a substitute and you have to do them if the attendant is absent. Toilet visits, cleaning up, helping patients walk, giving meals are some examples. You have to be able to handle these yourself. Take advice from a physiotherapist to make them less tiring and reduce the chance of injury. Keep any required gloves and masks to make tasks like diaper changes less unpleasant. Often, the fear of the task is more overwhelming than the task itself. Once you understand that you cannot avoid these tasks, you will find ways to do them.
If done effectively, using a trained attendant can reduce your work as a family caregiver. With less effort being needed for care, you may be able to find more time and energy for your other work and responsibilities.
But effective use of trained attendants requires planning and effort.
Start considering trained attendants as soon as your care responsibilities start increasing. That way, you will have made suitable arrangements before you and others in the family are fully stressed and tired. Look at the various options of using trained attendants to see what suits you. Have realistic expectations of what attendants can do. Prepare yourself for the attendant’s presence in your home. Make sure you explain the care required by your patient to the attendant. Support the attendant to help them do the work well. Supervise the work. Keep adjusting the home and what you make the attendant do based on the patient’s changing needs and abilities. Remember that using trained attendants, though very helpful, will not solve all your problems. You and the family are still responsible for the patient and have to remain alert and manage the care.
A useful document that you can adapt and expand to explain things to attendants: Trained attendant orientation note for dementia care (PDF file). This document includes pictures to show the attendant.
Some relevant interviews on this site:
- Practical concerns related to using trained help: A dementia caregiver shares her story
- Lack of proper attendants a major problem: Caregiving challenges, trained ayahs, depression
- Long-distance care hinges on availability of trained help: Long distance caregiving: a caregiver describes the challenges and her approach
- Problems getting reliable help: A doctor-caregiver shares her grandmother’s situation
An India-based caregiver describes, across multiple detailed blog entries, her experiences with home help and her attempts, failures and successes in training them:
[This page was last updated in June, 2015]