Caregiving load increases. Caregivers are unable to be present all the time and do all the work, and need support services
What caregivers can do: Understand the types of systems and supports available, and factors to consider while using them. Support and institutional help is available to help home-bound caregivers get time off, and also to provide patients with general home nursing services as well as dementia-specific care at home, or in special care units. Services need to be evaluated.
Caregiving for dementia can get exhausting physically, mentally, and emotionally. Also, as patients with dementia cannot be left alone at home, caregivers need to use services so that they can go out for errands while the patient is being taken care of. Or services should be available at home. A critical component of paid help is the trained attendant, and is discussed here: Using trained attendants for dementia home care. This page explains some other available dementia support and home care services and systems that may be relevant for caregivers.
Click here for dementia-related resources in India, and click here for city-wise dementia resources for cities like Bangalore,Delhi, Hyderabad, Kolkata and Mumbai.
On this page:
The current available dementia-specific support in India (Source: Dementia India Report, 2010, table 4.1) are:
- Residential care facilities: 6
- Day care: 10
- Domiciliary care services: 10
- Support groups: exact data not available
- Memory clinics: 100
- Help lines: 10
For more details on current resources, see Caregiver Resources in India
- Home nursing services
- Home-delivery pharmacy
- Home visits for dementia patient assessment
- Dementia Day Care
- Observation/ behaviour assessment stay
- Dementia Respite Care and Long-term stay facilities
- See also…
Home nursing services
Dementia patients are easily disoriented, and may get stressed if taken to pathology labs for tests, or to clinics/ hospitals for checkups and various procedures.
Many cities have services that can be availed from home. Examples of the type of services that may be needed are:
- Collection of urine and blood samples for tests, and maybe even home delivery of the report
- Nursing services such as injections, nebulizing, IV, catheterization and bladder washes, tube feeding
- Doctor home visits
Some cities have specialized home nursing services; check our resource pages on this site, or contact the elder helpline of the city. Major hospitals in the city sometimes have such services, too. Doctors are usually able to guide you to organizations that provide home nursing. Hospitals are also often aware of such service providers, because they often have to help discharged patients who need home nursing. Nearby nursing homes/ polyclinics may also be willing to help out for specific cases even if they do not have formal home nursing as a listed service.
Equipment needed for home nursing can be bought first hand or second hand, or hired. Typical places to get such equipment is a “surgical” shop, often found near major orthopaedic hospitals or in city centres, and addresses of such shops are available at both chemists and hospitals.
Home-delivery pharmacy
Caregivers may not always be in a position to go to a drug store to buy medicines. Many cities have pharmacies that do home-delivery of drugs.
Check with your pharmacy whether they are willing to deliver medicines at home. Often, if you are a regular customer, the pharmacist may agree to do home delivery. You can also ask your doctor or at a nearby hospital’s reception for possible pharmacies that provide this service.
Home visits for patient assessment
Some cities have specialists in dementia who can make home visits to assess the patient and make suggestions about the possible course for treatment and patient management
Often, such home assessment services can be obtained with the help of the local ARDSI branch, or any other dementia service (such as day care, respite care, or memory clinic) available in the city. They may also be available through any home-nursing service that has a “doctor on wheels” type of scheme where GPs and specialists can be called for home visits. You can check the resource pages on this site for possible contacts, or try the elder helpline of the city, who may direct you to an appropriate resource.
Dementia Day Care
Some cities have facilities where trained staff is available to look after dementia patients for for some hours every day, so that the caregivers can be free to do their jobs/ attend to other chores/ get relief from the fatigue of caregiving.
At the day care centre, trained staff remain present with the patient, doing “activities” with them, giving them meals, helping them walk or exercise, and assisting them with visits to the toilet, as required. Some provide food, while others expect that food will be sent along with the patient, and the staff at the centre will heat the food and serve it to the patient. Some centres also provide transport for patients.
Most centres have some criteria of whom they admit. They may not accept patients who are incontinent or unable to walk, and will probably not take in a bed-ridden patient.
A day care centre should be evaluated for the competence of the staff, the facilities, hygiene and layout, how thoroughly the centre tries to understand the patient, and such factors. For example, how comfortable would the patient be with the toilet there? Do staff members speak the same language as the patient? How much effort do they put into understanding the case history? How experienced are they with dementia patients? And so on.
One thing to remember is that if the patient is unwell or too disruptive for other patients, the day care staff could ask you to take the patient home, as some centres do not have the ability to handle extreme behaviour and some may not take responsibility for medical setbacks. An unwell patient may be asked to stay home till he/ she recovers. An excessively agitated patient’s family may be asked to take the patient home for the day. All these aspects must be discussed while considering the centre.
The checklist available here, while it applies for long-term care, may also have some useful pointers for day care centres.
Observation/ behaviour assessment stay
Some specialized dementia care organizations offer the facility for patients to stay for an observation period, where the patient is assessed for behavior and other problems, so that suggestions may be made on the way forward. Dementia is often not treatable, but there are other problems that may need intervention, such as sleep disturbances and agitation. Observation can help doctors suggest changes in how to handle these situations, and, if required, include medication.
Dementia Respite Care, and Long-term stay facilities
Activity room at Nightingales Centre for Ageing and Alzheimer’s,
Bangalore, a long-term facility that specialises in dementia care.
Respite care facilities take in the dementia patient for a few days, and have specialized staff trained to take 24 x 7 care of the patients. Caregivers may use respite care to take a short vacation, or to attend to work that they have not been able to handle because of the caregiving. For example, caregivers may use respite care to leave the patient when they need to go out of the city for some urgent work, or to attend an important function.
Long-term stay facilities, also called “homes” or “assisted living facility” may be considered by families who find they cannot handle the care at home any longer. This may happen when the patient behavior is very difficult to handle, or the caregiver is frail, or has other commitments of job and family, and is unable to juggle too many responsibilities. It may also happen if there is no caregiver in the city/ country where the patient lives. Caring for a dementia patient is difficult to handle unless the caregiver is able to fully re-align his/ her life for providing such care. Patients may therefore need to be transferred to a long-term stay facility.
Typically, the same centres provide both respite care and long-term stay. A facility that is geared for dementia patients may be an enriching experience for the patient if it offers features that are geared to the quality of life of the patient. These could include physiotherapy, activity rooms, reminiscence therapy, outings to places, and other such things that a home caregiver may find difficult to manage. Staff at such facilities is trained to handle dementia patients.
Often, in India, people assume that placing a relative in a long-term stay facility means the family gave up or neglected the patient, but this is not correct. It is not always feasible for people to make all the major adjustments required to take care of a patient at home, and a well-equipped long-term care facility is preferable to keeping the patient at home where it is proving increasingly difficult to devote enough time and energy to the patient.
Proper evaluation and thinking must precede moving a patient to respite care or long-term care. While general tips for selecting a facility are often available (see a checklist here), there are additional factors to be considered when checking whether a centre is suitable for someone with dementia.
Some assisted living facilities may not accept dementia patients. Even if they accept such patients, the care environment provided by a centre may not be suitable for dementia patients. Staff may not be adequately trained. Checking suitability of the facility for dementia patients is crucial. It is important , for example, to understand how the centre establishes a routine for the patient, as well as whether it provides suitable activities. Patients take time adjusting to anything new, and moving to a centre is a major stress for the patient; it may trigger them into agitated behaviour or withdrawal. Sometimes, centres that are not used to dementia patients may ask families to take back the patient if they are unable to handle the patient’s challenging behaviour.
For example, dementia patients are likely to get disoriented and confused. Even if they had agreed to move, they may forget where they are after they move. They may agitate or withdraw. The ability of the staff to handle dementia symptoms is critical for a successful stay.
Also, as the patients may not be able to communicate, the facility should have a good system for understanding the case history, likes, and dislikes, etc. Keeping in mind that the patient may not be able to alert relatives about abuse or problems, confidence on the centre’s systems is very important. Frequent checking up on the patient may be necessary.
Often, caregivers start looking for suitable long-term stay facilities only when they are desperate and burnt out, but there are very few really good facilities, and they usually do not have vacancies. Planning for moving a patient needs to be done in advance, and there may be wait times involved, ranging from weeks to even months.
Expenses may be a major consideration while selecting a suitable assisted living for long-term stay. It is important to understand and be comfortable with the fees structure. Most places have a deposit, and a monthly charge, and they also charge for some items based on actual expenses, and a realistic planning to fund such stay is necessary. Discussions required to decide the package will include the amount of attention the patient needs, and care centres usually have different packages depending on whether the patient needs “one-on-one” attendants.
See also….
Some relevant interviews on this site:
- A social worker explains: Care in a dementia day care centre
- Using respite care for the patient 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 .
