Most families consider employing trained attendants for care after the dementia patient becomes increasingly difficult to handle and requires constant attention. These paid attendants could be ayahs/ maids/ servants after a minimal training, trained attendants hired from agencies, often called “nurses” though they are not qualified nurses.
Once the patients reach the stage when they need constant care, families often find that trained attendants are critical for managing the patient’s care, but they also face several problems while trying to work with attendants. On this page, we look at the various aspects of using trained attendants.
On this page:
Patients start needing constant care. Families often need trained attendants to be able to handle the fulltime care requirement.
What caregivers can do: Understand the options for trained attendants and evaluate what suits the patient and family situation. Orient attendants for the patient’s care, set up the home to adjust to the attendant’s presence, take safety measures. Supervise attendants and use them effectively. Cope with absence and other problems.
- When to consider using trained attendants
- Sources for trained attendants
- What to look for in a good attendant
- Orienting the attendant for patient care
- Family’s adjustments to the attendant
- Safety and security
- Supervising and counselling the attendant
- Coping with the attendant’s absence
- Summing it up…
- See also…
In most families, the initial years of care are done by family members. The patient is still mobile and active at this stage, facing memory loss and confusion and having difficulty with some tasks, but still quite independent. Dementia is not even diagnosed in many situations, and the family merely feels that the elder is getting “senile” and forgetful, or acting “difficult” or “lazy”.
Families that are aware of dementia at this stage try to support the patient by adapting the home so that the patients can manage to remain reasonably independent. They help the patient for more difficult tasks, like taking them to doctors or banks, but otherwise do not need to do much.
Increased care and support is required when the patient’s growing inabilities and confusion start making normal activities difficult, and the patients may even start harming themselves. Leaving the gas stove on and letting food burn, forgetting to eat, wandering, calling up friends and expressing concern or complaining about neglect, blaming people for theft, and such behaviour make it necessary for the family to be more alert. The family gets more tense and worried.
During this phase of the patient’s progression, families often realize they need to employ someone. This is usually not obvious since the decline is usually gradual, and the need for constant companionship/ supervision is realized typically after an accident of some sort, like the patient wandering off or harming himself/ herself. If the patient is not yet diagnosed, this is often the point where the family thinks of consulting a doctor.
Some points to consider whether care staff needs to be employed are:
- Can the patient handle normal activities without help? We can make a list of what we expect the patient to be doing alone, and then assess competence on each of these.
- Does the patient need frequent reminders for things like eating food, having a bath, washing hands, etc.? Even if the patient can do things without help, he/ she may be confused and disoriented and therefore forget what needs to be done. Someone around the patient therefore has to remind the patient about important things.
- If left alone, does the patient act in ways that harm himself/ herself or others? How severe is the disorientation or loss of functionality because of dementia, and how fast is the dementia worsening? Patients may have reached a point where they wander, or where they take off warm clothes in winter or sit in the summer sun, or bump into furniture or trip and fall often. Or they may be violent to children in the house when they are alone with the children.
- How much time and attention does the family spend because of the patient’s state? The degree of assistance and supervision required may be a few hours, or spread over the day.
- How is the family balancing care for the patient with other tasks and responsibilities? If the family members are spending time and energy to handle the care required for the patient, this must be affecting other parts of their lives. It is not always possible to adjust life to fit in this constant care. There may not be enough family members to share the work, and confinement at home may make outside jobs and errands impossible to handle.
It is usually time to consider using paid help for at least part of the day if family members cannot find simple and comfortable ways to care for the patient themselves, and have to cut down on essential tasks or their career for it, or are getting overwhelmed and claustrophobic by the constant presence that patient care requires.
Caregivers should remain alert that sooner or later they will need to consider paid help, and therefore they should frequently assess the patient’s state and the amount and type of care needed to see whether to start employing help.
Decisions on what type of paid help to employ depends on multiple factors, such as availability, cost, patient’s needs, family comfort, and so on. Often, people use the term “nurse” for the help employed, but it is important to remember that usually the trained persons used for home care are usually not medically trained nurses. Broadly, the options commonly used are one or more of the following:
- 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
The advantage of using an ayah/ servant is that we may find someone we know as reliable and honest, and there are often many ayahs/ servants available. Someone who already knows and respects the patient may also be more considerate and affectionate. The problem here is, the burden of training falls entirely on the family caregivers, who may not have the knowledge themselves or have the confidence to train the person. They have to train the ayah/ servant both in caregiving skills (how to help the patient walk, being responsible for medication, etc.) and in dementia, and a trained ayah, who had no medical knowledge at all, may find it more difficult to accept dementia behaviour as something caused by a medical problem.
Often, families use agencies/ services that provide home helpers. Even in this case, though the available attendants may be trained to handle frail or elderly people, they usually do not have sufficient or appropriate training on dementia. Families often need to do the dementia training themselves even for agency-supplied attendants.
Most families opt for using part-time or full time trained attendants. Some employ only a day-time part-time attendant, and do the night-time caregiving themselves. Some people use two attendants, one for the day, and another for the night. Others prefer a full-time live-in attendant.
A full-time attendant means the family needs to provide meals and living space (including a bed and privacy); this is an imposition if the family lives in a small apartment, or if they do not have a cook. Most agencies supplying attendants have rules saying the attendant will not help in any housework, and has to be provided meals and space, and in families without a set of servants doing other work, this cooking burden falls on he family itself. Matters are further complicated as the attendant’s food choices may be different from that of the family, resulting in additional effort for the family to make food the attendant likes, or leaving the attendant perpetually dissatisfied. Another possibility is seeing if there is a “dabba” service that can supply food of the sort the attendant likes.
If the patient needs a lot of attention both at day and at night, a full-time attendant may be unable to handle all the work. Another problem is, when this full-time attendant falls ill, the family is without help, and also be in the unfortunate position of deciding whether to send the attendant home, or have to look after the attendant, who may need care or be infectious. And if the attendant has to rush home for some emergency, the family is left without help till the agency can find a replacement.
Using part-time attendants (either single or two) often saves the family the need to cook for the attendants (who are supposed to bring their meals if they are not living with the patient and the family) except for providing them tea and snacks. There is also no need to provide them sleeping space. Often, agencies can be persuaded to make the attendant continue his/ her shift till the next shift’s attendant reports for work.
While deciding on whether to employ full-time or part-time attendants, we also need to see how well the housework is supported with other help, such as maids, drivers, and cooks, who can help if the attendant does not report for work.
Another important consideration (perhaps the most important) is how the dementia patient adjusts to the arrangement. Many of them many find the switching of attendants day and night to be disorienting, especially if the two attendants have very different ways of helping the patient do things.
Another decision is on whether to use male or female attendants. While it is expected that female attendants will be used for female patients, we need to decide whether to use female attendants or male attendants to care for male patients. In homes where there are mainly female family members, they are more comfortable if the attendant is also female (they feel safer), but there may be other considerations, such as (1) can the female attendant handle the physical effort required and (2) is the behavior of the male patient socially acceptable? In some types of dementia, patients can be aggresive and abusive and behave in uninhibited or socially unacceptable ways (including lewd comments and making sexual advances). If so, having a female attendant could pose more challenges and need special care/ caution.
While evaluating the financial factors, do consider the costs of food and other living costs for full-time attendants.
Very few patients need the sort of medical attention that requires employing a proper, qualified nurse. Often, some arrangement with a home nursing agency to send in a nurse for an occasional injection (or some other medical procedure) works well enough. The costs of employing a qualified nurse for home care are very high, and this option is usually not required for most patients, except for brief periods of severe illness. Also, qualified nurses may find the day’s work boring and not in line with their qualifications.
Trained attendants (part-time or full-time) and nurses are usually employed by using agencies that supply them. Sometimes, people employ attendants directly instead of getting them through agencies because it costs less. However, this leaves them in a lurch if the attendant does not land up for work; if the attendant is being supplied by an agency, the agency is supposed to send a replacement.
Agencies bill the family, and pay the attendant/ nurse after deducting their commission (which may vary between 500 rupees to up to 50% of what they charge the family). The agencies are supposed to ensure that the attendants are “trained” and “reliable”, but often there is no real undertaking about this, and the quality of agencies and the attendants they supply varies widely. Agencies/ attendants sometimes overstate their experience to get a job.
Agencies are also supposed to send substitute attendants when the assigned attendants go on leave. While some agencies do so, others ask the families to ‘adjust” for a few days. Some agencies keep expressing their inability to provide attendants, but keep postponing the refund of any deposit they have taken. Checking up the reputation of the agency is advisable.
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.
- Check up with the elder helplines of the city
- Check with the desk of a good hospital; they often have such names because families often need attendants for patients being discharged from hospitals . Orthopedic and cancer hospitals are more likely to have such contacts
- Search on the internet
Whichever source you use, you need to be very careful about the quality and skills and character of the person you employ.
We all want a trained attendant who can competently handle the caregiving required for the patient. It is worthwhile to list out the tasks and responsibilities we want attendants to handle, so that when we meet an attendant we can see whether the person can handle the required work. Here is a tentative starting list:
- Should be able to read and write enough to read instructions, notes, and medicine labels, and write down readings, observations, etc.
- Should understand hygiene (self and patient), such as the need to wash hands, basics of infection, cleaning, etc.
- Should understand enough about health and medicine to know the importance of following the doctor’s instructions, and how to administer medications and put eye drops (and give insulin injections if applicable)
- Should be competent and willing while assisting the patient for all activities, such as bathing, toileting, walking, sitting up, eating, diaper change, enema, catheter-related work (non-nursing), and other personal activities
- Should know first aid
- Should be alert on medical problems and report them in time
- Should be specially alert on bedsores and know how to avoid them/ dress wounds etc.
- Should be able to accompany patient for outside visits, such as outings or doctor visits
- Should understand modern appliances and medical equipment sufficiently as to use them for patient comfort
(It is also very desirable that the attendant understands the nature of dementia and knows the various techniques to communicate with patients or help them in daily activities. However, it is very likely that families will have to do this part of the training themselves and cannot depend on agencies to supply attendants knowledgeable and experienced in dementia care)
In terms of personal characteristics, ideally the attendant should be honest, empathetic, reliable and responsible while providing care, alert, and willing to adjust. An attendant with a calm and pleasant demeanor is more likely to be effective for dementia care.
If possible, families the attendant has worked for previously can be contacted to verify claims the attendant makes.
Typically, attendants are expected to do all the work required for patient care, such as walking them, feeding them, handling their bath and toilet and other hygiene needs, doing activities with them. Attendants are expected to wash soiled clothes and keep the patient bed and area clean, including the bathroom the patient and attendant use. They are expected to heat the patient’s meal and serve it, but not cook the meal (except maybe tea). The exact scope of work is best discussed beforehand with the attendant and he agency, so that there are no misunderstandings.
Attendants employed through agencies are usually not supposed to do any housework. They cannot be asked to clean the house, or help in shelling peas or cooking or cleaning utensils, even if the other household help does not report for work. They cannot be sent out for shopping. Meals are supposed to be provided to full-time attendants (but not to attendants working in shifts).
The amount of leave the attendant is entitled to, is also part of the contract. This is relevant only for full-time attendants–some agencies require that attendants get a half-day every week to catch up with personal shopping and to relax.
The above is only an indicative list. It is advisable to discuss the exact scope of work with the agency before employing the attendant, so that there is no misunderstanding. Regardless of the contract with the agency, some attendants are willing to do a few more chores on payment, or otherwise make adjustments for mutual convenience.
Any attendant being employed for patient care should understand enough of normal geriatric care and first aid and such things (see previous section). In addition to whatever normal training the attendant is expected to have undergone, families need to orient the attendant for the specific needs of their patient, and their home environment. Some attendants may have been trained for general bedridden patient care, some may be trained for geriatric care, and some mayt be trained for, or have experience with dementia patients. As a first step, find out the extent of relevant training and experience the attendant already has.
Ensuring that the attendant understands dementia is extremely important. This understanding has to go beyond the shallow utterance of phrases like “memory loss” to having a true understanding of how the reducing abilities of the brain start impacting behaviour, and how attendants can handle communication and assistance in tasks of daily living, etc. The tendency to confuse dementia with old age has to be removed. Some tips for this:
To orient the attendant, we need a simple explanation of dementia and basic caregiving skills. Families have to supplement this with tips and examples based on the patient’s likes and dislikes, triggers, etc.
Here is a document that families can use as a starting point to create their own “orientation note”; the document includes pictures the attendant can be shown: Trained attendant orientation note for dementia care
- Show the attendant authoritative literature on dementia (in their own language if possible), pictures of the brain changes, videos of dementia patients.
- Pictures of the changes in the brain are particularly effective in convincing the attendants of the medical nature of the problem (as against the assumed “attitude” problem)
- Take the attendant to a dementia day care centre or respite care, and ask the volunteers there to explain dementia, and let the attendant see other patients
- Ensure that the attendant understands basic skills of communication, helping in activities of daily living, handling challenging behaviour, and doing “activities”
- Use role plays and movies to make sure these skills are understood well enough
Note that attendants may say they understand dementia but may not actually believe it. They may think you are making excuses for your parent’s odd behavior. This is why it is very helpful to involve a volunteer in the training, or take the attendant for a visit to a day care centre, of use other information sources/ training methods that seem authoritative and neutral.
Every patient is different, and even if the attendant has prior experience with dementia patients, it may not be easy to adjust to the new patient. To orient the attendant for your patient, you need to provide more detailed explanations. Examples:
- For each activity (such as bathing, going for walks, eating, dressing), explain the patient’s preferred way to the attendant, demonstrating with actions where necessary
- If there are some actions or words that particularly agitate or scare the patient, explain them
- Tell the attendant of any words the patient uses which mean different things from what other people use the word for
- Explain the patient’s likes and dislikes
- Share any tips on warning signs that indicate the patient is getting upset, and how to handle these
- Explain any special behavioural challenges that are likely for the patient, and how to avoid or minimize them
In particular, make sure the attendant knows if the patient is likely to get angry and start accusing the attendant. Make sure the attendant understands that there is no need to get defensive, and that arguing should be avoided. The attendant may need to be reassured that you will listen to their version later, and that they should not start telling you the patient is wrong in the presence of the patient.
As the attendant will be spending a significant amount of time at home, and also assisting in various tasks, it is also important to make sure that the attendant can use things like fancy faucets and gas stoves and geysers and TV remotes, and any other equipment they may need to use.
Make sure the attendant also understands how to handle problems, whom to call in an emergency, and so on.
Families often do not spend enough time and thought to the aspect of how their lives will change because of the constant presence of an attendant. Privacy gets affected. Things cannot be left around because of fear of theft. People have to be more careful of what they say and do, and they are constantly aware that some stranger is there in the home with them. Female members of the house may be uncomfortable with the fact that a male attendant is always there; children may need to be kept safe.
Before getting an attendant, it is good to review the home to see whether some changes in layout and such things would make it easier to adjust to the constant presence of the caregiver. Maybe some objects need to be removed, some doors need to have latches so that there is no risk of the attendant walking in when people are changing clothes. If the attendant is going to be living in the patient’s room, the spouse may want to move away objects with intimate memories, letters, diaries, and photographs (not just valuables).
A common mistake families make is not being sure who will instruct the attendant, and therefore ending up in a situation where different family members give conflicting instructions to the attendant. This causes confusion and can be quite unfair to the attendant who gets pulled up by one person for doing something another family member had told him to do. Families must be clear on whose role it is to coordinate the work of the attendant.
Families also need to consider how the tasks will be shared/ coordinated across various paid help employed for patient care and housework and other support. Lack of clarity within the family on this can result in mixed signals to the employed staff; often, there are ego conflicts and accusations/ counter-accusations if the boundaries of work and responsibilities are not clear.
Leaving elders with dementia alone in a home with a paid attendant is scary; we need to take active steps for safety and security.
One fallout of having an attendant is the increased risk of petty thefts. While some attendants are scrupulously honest, many are unable to resist temptation. Over the days, families notice small objects vanish, like mementoes, a clock, a favourite pen. While families try to keep these locked, often it is not possible to lock up everything all the time.
The bigger problem is that the home may seem an attractive proposition for a bigger theft, where the patient and family may be at risk because the hired attendant and his/ her friends are tempted to a point where they would stage a bigger robbery and may even hurt the patient and family members.
The best approach is to deter the attendants. For this, we need to make sure the attendants
- genuinely feel that there are no valuable in the house that could be worth robbing, and
- know that they are recognized and their contact information is available widely, so that they can be traced the moment anyone suspects them of wrongdoing
The family can convey the absence of tempting valuables in multiple ways. Do not let the attendant see you handle large amounts of money. When asked for money, say you will need to go to the bank or ATM, instead of pulling out a bundle of notes from a purse. Keep jewellery to a minimum, and never take it off. Stay away from any show of opulence that would lead an attendant to think there is cash and jewellery at home. Remove displays of expensive mementoes that look like they are made of silver or gold. Look at your rooms for things that could tempt an attendant and see how to reduce them.
There are also multiple ways to make sure the attendant knows that you and your friends and relatives and the police all know the attendant’s contact details and have his photo. 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 mention how you have shared this with friends. Keep a photocopy of the attendant’s identity papers (like driving license or ration card or electoral card).
When the attendant knows that the family has his/ her personal information, address, and photographs, this acts as a deterrent and the attendant is more likely to hesitate doing anything wrong knowing that he/ she can be traced by the police. Some families even consider installing security cameras.
Some cities have special neighbourhood watch schemes, and also schemes of enrolling adults. Use these to make sure the attendant knows he/ she is under observation, and is therefore less tempted to do anything drastic.
If you work, and are leaving the house on the attendant, you can call home frequently, at random times, maybe using a video link. Or perhaps ask neighbours or relatives to drop by now and then, just to peep in and say hello.
Howsoever well trained an attendant may be, the family has to make sure they supervise the care being given. Attendants may make mistakes because of ignorance, or because they are tired, or careless, or stressed. They may be scared to admit that the patient is having a problem because they are scared they will be blamed (so they may delay telling the family about a bedsore). Or they may make a mistake and try to hide it, more particular about avoiding blame than about getting proper medical attention to the patient fast enough. They may have different standards about how severe a problem must be for a doctor to be called in.
Family caregivers need to be very clear about what the attendants can do and what they cannot do, and also which activities to monitor. They can make their own checklists for such supervision by consulting with their doctors and also discussing within the family, or talking to friends who have done similar caregiving.
Many family caregivers realize, after some bitter experiences, that even if they employ a trained attendant, they need to understand enough of what care involves and how to do it, so that they can check whether what the attendant is doing is adequate, and take over or train a substitute if the attendant is absent. Somehow, matters related to the patient’s hygiene (bath, toilet) are things family caregivers tend to delegate without supervision, but neglect in these can be very costly to patient health. A bath, for example, is the best time to check the patient’s body for any wounds or other problems, and the attendants may not be alert enough to notice or report these problems.
Using trained attendants can really ease the workload of family caregivers, but the responsibility remains that of the family, as for the attendants it is a job and they can switch jobs any time. Some attendants are sincere and really care, but not all of them are dependable and competent enough.
An important thing to remember is that the patient’s needs, and the care required, change over time. Accordingly, the attendants need to be re-trained and checklists need to be revised over time.
Anyone caring for a dementia patient will encounter situations that are stressful, such as the patient’s withdrawal or frustration or rage. Watching a patient lose memories and abilities is also stressful. The attendants may be subjected to the patient’s anger, or may get upset that Amma who seemed to understand something yesterday now claims she has no idea of what is being said. The ups and downs that patients experience often leaves anyone involved in caregiving wondering whether the problems are genuine. Trained attendants, being in close contact with the patient for several hours every day, may forget the role of dementia in the patient’s confusion and get upset at behaviour they consider unreasonable.
Repeatedly counselling the attendants about dementia and making sure they place the patient’s behaviour in perspective is necessary so that the attendants don’t burn out. This is especially so if patients do or say things that are insulting and hurtful, because the attendants may assume the patient wanted to hurt them and get stressed or even walk out. Often, the way the family members cope with the patient’s difficult behaviour affects how the attendants cope with it. When patients complain, if the attendants know that the family members will find out facts instead of directly believing the patient’s version, they may refrain from arguing with the patient.
One special aspect is the counselling required if the patient’s behavior is aggressive, abusive, or socially unacceptable. Attendants may need repeated counselling to remember that such behavior is not directed personally at them. It is a result of the patient’s brain damage. Patients may also pass lewd comments or make sexual advances; families need to be sure the attendant is not at any risk. They should not dismiss any complaint by the attendant as false, feeling that the patient’s character was excellent and so he could not have groped at a female attendant. Instead, they should investigate. If there is a problem, they need to take steps to handle the problem, accepting that the patient is not at fault, but the situation still needs handling. The safety and security of the attendant is the responsibility of the family.
Family members must not forget how stressful and skilled patient care can be, and if we want the attendants to stay on the job and remain calm and cheerful, we have to make sure the attendants are able to remember the dementia perspective and stay aligned to the job, rather than feel insulted and threatened and insecure.
Making sure the attendant’s stay is comfortable helps the attendant feel more relaxed and do the work better. Small gestures like getting them magazines to read can make them feel valued, and are worth considering.
The most common problem family caregivers report with respect to using trained attendants is that they do not report for work in time, or that they absent themselves from work. Often, this leaves the family members in a lurch at short notice because they cannot get a substitute in time.
One way some families cope with it is having a two-attendant system where they use a day-shift attendant and a night-shift attendant, and they allow one attendant to leave only after the next one reports on duty. Some agencies that supply attendants agree to this arrangement. The arrangement, however, does not always work as the attendant may refuse to stay back because of other personal work.
In households with multiple staff, there may be others who can help if the trained attendant does not turn up. The maid who does the housework, the cook, the driver, even the lift-man of the apartment complex, can be pulled in for an errand or so. Some families make sure that other household staff is willing and comfortable helping in some of the difficult tasks.
Anyone who is pulled in to help during the absence of the trained attendant needs to be trained for the task, especially for critical tasks, because the patient may not cooperate, and is also often unable to explain what she wants done or what is wrong. This is one major reason why family members need to know enough about the care required and how to do each task, because it is their responsibility to make sure the substitute attendant, or anyone else who is helping, can do the required task well.
Some tasks cannot keep waiting for a substitute to arrive. If there is no one else to do them, the family members have to do them, for example, tasks related to hygiene, meals, or helping the patient walk. Given that attendant absence cannot be avoided, family members must know how to take over these tasks. Advice from a physiotherapist may help make these less tiring and reduce the chance of any back injury to the caregivers. Keep the home equipped with things like gloves and masks may make some other tasks less unpleasant. Often, the fear of the task is more overwhelming than the task itself, and once the family members understand that they cannot avoid these tasks every time, they may find that the tasks are quite manageable.
In conclusion, using a trained attendant effectively requires planning and effort, but if done effectively, it can reduce the family caregiver’s work and bring it to more acceptable limits. Caregivers can then use part of their time and energy for other work and responsibilities.
Considering the use of trained attendants can start as soon as it is obvious that the family caregivers are getting stretched by the care responsibilities, so that arrangements are in place before the family feels burnt out. Pros and cons of various options of trained attendants should be evaluated to decide on the type of help to employ. It is necessary to have realistic expectations, prepare for the attendant’s presence, spend effort orienting and supporting the attendants, and stay in touch with what the attendants are doing. Care approaches must be fine-tuned as the patient’s needs and abilities change. Family caregivers should also remember that trained attendants, though a critical element in dementia home care for many families, are not a solution for all problems, and that the primary responsibility of remaining alert and managing care remains with the family caregivers.
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: