Caregiving load increases. Caregivers cannot be present all the time and do all the work. They need support services.
What caregivers can do: Understand the types of systems and supports available. Evaluate available services and facilities. Use support services and centers to get a break or to manage work outside home. Use general home nursing services for dementia care. Get dementia-specific care at home, or in special care units.
Looking after someone with dementia can be tiring physically, mentally, and emotionally. After the initial stages, most persons with dementia cannot be left alone at home. Families need help to care for them when they have to go for errands or jobs, etc. The previous page discussed using trained attendants for dementia home care; this page discusses other available dementia support and systems.
- Home nursing services.
- Home-delivery pharmacy.
- Home visits for dementia patient assessment.
- Dementia Day Care.
- Observation/ behavior assessment stay.
- Dementia Respite Care and Long-term stay facilities.
- Information on available services and facilities in India.
- See also….
The COVID 19 pandemic highlighted how seniors are more vulnerable to serious infections and complications, and how asymptomatic carriers add to the risk. In general, families must make sure they look at how the service providers take steps to protect service users from infections.
Caution 1: Sometimes service providers claim they have a collaboration with (or certificate from) some well-known organization, such as from the national or local dementia body, or a reputed elder care NGO. Please check such claims; in some cases, such claims have been lies and service providers have used these names as a marketing trick.
Caution 2: Sometimes families enroll with an agency based on the services being offered. But they do not stay in touch. Later, when they contact for that service (often in an emergency), they are told that the service has been discontinued. This can be very inconvenient and unsettling for families facing difficulties. Please make sure you stay in touch with the provider and confirm periodically that the services you may need are still being provided by them.
Entities providing home health care services need to ensure that their health care workers take all recommended precautions to protect the person with dementia from possible infection.
Persons with dementia get confused easily. They don’t always know where they are and why they have come there. They may get stressed if taken outside to labs for tests, or to clinics or hospitals for checkups.
Many cities have services to help home care. Examples are:
- Lab collection services. Here someone will come home to collect urine and blood samples for tests. They may even deliver the report home (or email it).
- Home nursing services. These send nurses home for injections, nebulizing, IV, catheterization and bladder washes, tube feeding.
- Doctor home visits.
Some cities have home nursing services specially meant for older persons or for dementia patients. (See links at the bottom of the page to locate these). You can also call your city’s elder helpline to get information. Major hospitals may be offering such services. Doctors may tell you about organizations that provide home nursing. Hospitals may also know about such services because they often have to help discharged patients who need home nursing. Nearby nursing homes and polyclinics may help you even if they do not list home nursing as something they do.
You can buy or hire equipment needed for home nursing. This may be available as new or second hand. Contact “surgical” shops; these are usually found near major fracture clinics (orthopedic hospitals), and in any city’s central area. Chemists and hospitals will be able to tell you where surgical shops are.
Caregivers may not be able to leave home to go out and buy medicines. Check with your pharmacy whether they will send medicines home. They usually agree if you are a regular customer. There are also many pharmacies and e-pharmacies that do home-delivery for anyone who asks, and here may also be 24×7 services in some. Your doctor or nearby hospital will be able to tell you about these pharmacies.
Some cities have dementia specialists who make home visits to assess individuals with dementia. They then suggest how families can proceed with formal diagnosis, treatment, patient management, etc.
Home assessment services may be available from some dementia organization in your city (such as day care, respite care, or memory clinic). You may also get them from a home-care service that includes doctors. See the “Information on available services and facilities in India” section at the bottom of this page.
As the pandemic showed, elders are more vulnerable to infections and complications. In general, families thinking of using day cares should ensure that the person will remain protected while going to and coming from the day care and also at the day care. They can discuss the precautions and procedures being implemented by the day care to keep the persons safe from infections, and see if they are satisfactory . They should ensure that the processes are actually being followed at the day care.
A dementia day care center is a place where trained staff will look after persons with dementia for some hours every day. You can have some time free to do your job or handle chores or get a break from care work.
At the day care center, trained staff do “activities” with the persons with dementia, give them meals, help them walk or exercise, and assist them with visits to the toilet. Some centers provide food while others expect that you will send food with the person, and they will heat it and serve it to the person. Some centers provide transport.
Most centers have some criteria to decide whom they will admit. They may not accept persons who are incontinent or unable to walk. They will probably not accept a highly dependent or bed-ridden person.
An increasing trend nowadays is to have “active ageing centers” or “elder enrichment centers” where elders can spend parts of the day with peers, engaging in an enjoyable mix of social, mental, and physical activities. Some such places also accept seniors with dementia and may have suitably adapted activities for them.
To check a day care/ active ageing center/elder enrichment center, see the competence of the staff, the facilities, and the hygiene and layout. Observe how well the staff tries to understand the person with dementia. Think of how your loved one will fit in. For example, think how comfortable the person would be with the toilet there. Do staff members speak the same language as the person? How experienced are they? And so on.
Note that if the person with dementia is unwell or is disturbing others, the center could ask you to take the person home. Some centres do not have the space or staff to handle extreme behavior. They may not want to handle medical setbacks. They may ask you to keep an unwell person at home till he/ she recovers. Find out such things when deciding whether or not to use that center.
Checklists used to evaluate long-term care facilities may also have some points that help check the suitability of day care centers.
Some dementia care organizations take in persons with dementia for a short stay for observation. The person may have problems like sleep disturbances and agitation. Observation helps the doctors suggest how to handle these situations, and, if required, may include medication.
These are facilities with staff trained to take 24 x 7 care of dementia persons.
Such a stay may be for a few days so that caregivers use these when they need some place (respite care) that can handle care for some days. For example, they may use a respite care to go out of town for business or vacation.
The facility may also support long-term stay, also called “homes” or “assisted living facility”. Such care homes are considered by families who cannot handle the care at home any longer. This may happen when the person’s behavior becomes too difficult to handle, the person is in late-stage dementia, or the caregiver is frail, or has other commitments of job and family. It may also happen if there is no caregiver in the city/ country where the person with dementia lives. Many caregivers may not be able to make major changes to their lives so as to take out the time and energy for dementia care.
For those residing outside India, some families consider care homes in India (rather than the country they live in) if they feel the person with dementia will not be comfortable in the care home outside India due to food, language, and cultural differences.
Typically, the same centres provide both respite care and long-term stay.
In India, many people think that placing a relative in a long-term facility means the family gave up or neglected the person. This is not correct. A facility designed for dementia persons can be very good for them because it has programs to improve the person’s quality of life. Staff at such facilities is trained to handle persons with dementia. Such places have facilities like physiotherapy, activity rooms, and reminiscence therapy. They arrange outings to places, and have cultural activities. These are things that a busy and tired home caregiver may not be able to provide. A well-equipped long-term facility may be better than keeping the person at home and not having enough time and energy for care.
Some centers are designed specifically with dementia persons, and may be open to only dementia persons or to seniors with special needs (including dementia). Also, increasingly, full-time stays for seniors are opening up sections of their old age homes for dementia persons, sometimes informally, and sometimes publicly. Whatever the type of place, all such facilities must be checked properly before the person with dementia is moved there.
Sometimes service providers claim they have a collaboration with (or certificate from) some well-known organization, such as from the national or local dementia body, or a reputed elder care NGO. Please check such claims; in some cases, such claims have been incorrect and service providers have used these names as a marketing trick.
Check basic suitability of the facility. Look at standard aspects like the facility administration and reputation, the layout, dining, cleanliness, staff and their competence, and so on. Consider fixed and variable costs, security deposits, terms and conditions, various stay options, availability of trial period stay, etc. Many standard checklists and websites are available for such evaluation. (check the See also section below).
Ensure that the facility is suitable for someone with dementia. Persons with dementia have problems communicating. If the staff is not trained for dementia, they will not be able to help the persons and may end up mistreating them. Persons with dementia may not be able to tell the family about abuse or mistreatment. The facility also needs to be designed for dementia care. Some things to look for (Caution: This is not a complete list):
- Does the place accept persons with dementia? Some assisted living facilities do not accept persons diagnosed with dementia. Or they may say things like, the “patient has to cooperate.” That means they may have unrealistic expectations about the person’s behavior. Some facilities may ask families to take back the person if the person gets agitated often, or shows other difficult behavior.
- Is the building design and environment suitable for dementia care? Look at things like how they will prevent wandering, do they have grab rails, do they have areas for activities, safe walking, etc. Look at the lighting, fresh air, noise levels and crowding. Think whether the person with dementia would be comfortable there.
- Do they make care plans for each person they accept? How do they document and use the person’s case history? This includes things like the person’s background, family details, likes, and dislikes, preferences, medical history, etc. How do they make a daily routine that is suitable for each individual? How do they gather information and keep the family informed about the person?
- How does the staff ensure smooth transition of the person from home to the center? How do they reduce the inconvenience and problems the person with dementia may face while adjusting to a new place? Do they involve the family to make this easier for the person? Or do they behave as if such problems do not matter, and say things like it’s okay, we will do it? Does the facility have a trial period?
- Is the staff trained and experienced for supporting dementia care? Do staff members know how to talk to persons with dementia, and how to understand them? Do they know how to help them with tasks, handle their agitation and withdrawal, and encourage them to do meaningful things? Can they manage uncommunicative, fully dependent persons?
- What is the staff-patient ratio, and does the facility have other specialists who assess and help patients? Do they have occupational therapists, nutritionists, physical therapists, etc.? Is one staff member allocated per shift per person with dementia? Or does each staff member handle more than one person? How does a staff member divide his or her time if the staff member has to manage more than one person with dementia? Do senior staff members advise and supervise the juniors? If a person with dementia needs special attention, are “one-on-one” attendants made available? (This may be charged extra)
- What is the center’s approach for challenging behaviors? Do the staff use various non-medicine approaches first, or do they prefer to first give anti-psychotic medicines? Are family members consulted before such medicines are given?
- How do they handle illness, accidents, medical emergencies, etc.? Do they have arrangements with ambulance services and hospitals? Do doctors visit and examine patients regularly? Are these doctors trained for dementia? Does the center have staff and equipment to give basic home-nursing treatments? Do they have nurses trained for dementia care? This is important because people with dementia may not respond to questions. They may not tell that they are in pain or having discomfort or fever, and so nurses need to be specially alert.
- Will this center handle care once the person reaches late stage dementia? Many centers don’t handle late stage care. Will they tell the family to take the person away once the person reaches advanced dementia? Will they keep the person but not be able to give good care at that stage?
- How do they give the family updates about care status and issues? Can the family visit often? Are they regularly informed about the person’s state? Some centers allow Skype or have videocams. This lets the family stay in touch and see how person’s care is being done. Does the facility maintain records of day-to-day status?
Spend some time at the center to observe things and talk to the staff. This will help you decide whether the person with dementia will be comfortable there. You can see if you consider their way of care good. In addition to points discussed so far, here are some things to look for (this is not a complete list):
- Are the existing residents looking calm and happy? Are they looking bored and listless? Are some of them engaged in activities?
- Is the place noisy or crowded? Is there enough place to walk around? Is the place safe (e.g., no sharp corners, slippery areas, no change of wandering out)? Is it neat and well-lit? Will your loved one feel comfortable here?
- Do the staff members look comfortable and competent, or do they look irritated or unconcerned? Do they seem friendly or distant? Are they paying attention to the persons with dementia? Are they bossy or insistent? Are they polite and considerate? Do they respect the privacy of the persons with dementia? Ask staff members about the problems they face while giving care, and how they handle them.
- Are the residents well-groomed and neat? Is there any smell of urine or stale food or anything that could mean poor hygiene?
- Do the administrators seem open and friendly? Or are they dismissive? Ask them for references of families of other residents of the facility. You can then ask these families more questions.
- Look at the location of the place and how they function. Consider how practical you will find it to visit them and stay informed.
Persons with dementia get stressed when placed in a center (whether for short term stay or long term stay). They may not know what is happening and why. They may feel abandoned. They may be disoriented because everything is unfamiliar–the place, people, food, etc. Proper evaluation will improve the chances of selecting a place where the person with dementia can adjust better and be happier.
There are no reliable, well-implemented regulations and safety guidelines for such care centers in India. Centers are not accountable. It is critical that you are cautious when selecting a dementia center. Also, you have to remain alert about the care and treatment being provided.
Often, caregivers begin looking for long-term stay facilities only when they are desperate and burnt out. But there are very few good facilities, and these may not have vacancies. You must plan in advance and remember there will be wait times that could be a few weeks or even months. Do not leave the evaluation for the last minute or you may be forced to make hasty decisions that you don’t like. The person may be staying in the assisted living place for years. You need to budget for it and have a correct idea of the cost. This includes deposits, refunds, fixed and variable expenses, and extras that are charged for medicines, diapers, one-on-one” attendants, etc.
You may have to place someone in a care center even if it is not as good as you would like it to be. If so, negotiate with the management to get the best possible care given the constraints. This may include having “one-on-one” attendants, insisting you can have Skype calls with the person, and making other arrangements suitable for the person. Remain alert about getting regular updates. When families remain actively involved in the care, ask questions, and show concern, they get better care.
Note: During the pandemic, care homes implemented additional processes to ensure residents, vulnerable because of their age and existing comorbidities, stayed safe from infections. Processes to care appropriately and monitor health regularly were also reviewed and strengthened their health monitored regularly. One video that explains how one of the largest care homes in India has taken steps to keep its residents safe (recorded in Sep 2020) can be see here and will give some idea of how care was affected during COVID times (relevant speaker introduction and talk start at 34 seconds): Prem kumar Raja on COVID management in Institutional settings.
India has very few reliable facilities that specialize in dementia care. You can see the all-India data and city-wise/ region-wise data on dementia support and services in India on this site’s resource pages; see the “See Also” section below for links.
Resources/ references from Dementia Care Notes and related site.
Related discussion: Using Trained Attendants for Dementia Home Care.
Some relevant interviews on this site:
• A social worker explains: Care in a dementia day care centre .
• Using respite care for someone with dementia while setting up appropriate care at home: A family recognizes dementia and adjusts for it .
• Using a combination of services to support care long-distance: A son talks of supporting his caregiver mother .
External links relevant for this page.
A checklist for evaluating a long-term care centerOpens in new window (may be useful for day cares also).
You can also visit any of the several sites and bulletin boards that discuss senior care and placement related issues (these are not India specific).