Apply available dementia/ caregiving material to the Indian context

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Most dementia and caregiving material available (websites, books, DVDs, videos, presentations) assumes a social and cultural context different from what we find in India, which means that anyone using that to design systems and supports for India needs to adjust the advice given to take the Indian setting into account.

Briefly, books, pamphlets, write-ups available in English usually assume an American/ European/ Australian culture, where people are more likely to live independently (compared to India), where they openly and without hesitation make choices that allow them to “have a life”, discuss their desires and needs, and have their privacy respected. Specialized tools are available, and information on dementia is widespread (compared to India). The role of support persons and caregivers is recognized and respected. The environment in India differs along these axes in varying degrees. We must therefore re-interpret some lessons/ suggestions, and explore alternate means to meet the intent. This is applicable to caregivers, counselors, support groups, and NGOs.

Below are my observations and thoughts on differences and possible ways to re-apply the underlying ideas in our context. Please use the comments area to share your thoughts and data on the topic.

Privacy and independence In India, people openly comment on others, judging and criticizing them for the choices they make, for what they look like, for what they are doing and not doing. Caregiver actions are therefore, fair game for everyone. Many people who comment are well-meaning but ill-informed. They pass caustic comments, especially if the caregiver is a daughter or daughter-in-law and the visitor is elder (and elders are always experts 🙂 ). Worse, visitors egg on the patient by telling them to demonstrate more will power, or criticize/ scold the caregiver in front of the patient. Unfortunately, methods of maintaining patient and caregiver sanity in face of such visitors are not addressed in books on dementia care, because they assume a society where people (even if judgmental or critical) are unlikely to voice this directly (however, they may call up social workers and the police 😦 ).

For caregivers: They need methods to handle intrusive comments calmly, possibly by presenting authoritative material (from respected sources, and from attending doctors) to explain the rationale for their actions/ choices. Caregivers also need to be firm about the patient’s need for routine and insist that visitors respect it. This may not be a big issue in countries where visits are usually after permission; here, in India, people drop in whenever they want, expect to be hosted, and stay as long as they want. They assume they have a right to meet the patient even if he or she is resting. Further, they abound with advice. Caregivers should to be mentally prepared to tackle this. (Here’s my blog entry on how I handle this.)

For counselors, support groups, and NGOs: Prepare and disseminate material that caregivers can use to deflect such intrusions. A pamphlet on the illness and how a visitor can help the patient may be useful if the visitors are educated and willing to read. It is also important to have tips for caregivers on how they can receive/ respond to well-intended advice without getting upset. Counselors need to brief caregivers on methods to ward off such ‘attacks’ while maintaining the respect elder advisors expect (even if they are intrusive).

Authority of elders. While elders are respected in all societies, in countries like India, an elder can never be wrong. ‘Respect’ of an elder means not contradicting and not suggesting anything. It means ‘obeying’ the elder, even if the elder’s judgment is compromised because of problems like dementia. Handling a patient while maintaining this modicum of respect is not addressed in most books of dementia. They focus on dignity of the patient, which is very useful, but they do not provide tips for situations where elders expect to remain head of family and to be obeyed all the time (and others around also expect this).

For caregivers: More thought and practice is needed on how to deflect situations where a patient may feel his/ her authority is being questioned. The skill of ‘fiblets’, of distraction, may be more critical here.

For counselors, support groups, and NGOs: They need to specifically focus on this while training, supporting, and counseling caregivers. More case-studies on this may help equip caregivers effectively for such situations. Support groups can use this as a topic of discussion to share experiences and find effective ways to handle this.

Activities It is necessary to keep patients as active as possible (without tiring them), and suggestions contained in most books include specific ways to get patients to participate in chores. One classic example every book quotes is asking patients to fold clothes (I sometimes wonder exactly how many clothes are washed every day 🙂 )

This type of work may need modification in India. (1) Men, for example, rarely do chores at home all their adult life. They will be clueless on handling chores, and also see this as an insult (2) Many elders assume that as they age, their children will take over the chores. They may react to such suggestions with anger/ a feeling they are being exploited/ deserted (3) People from upper middle class backgrounds assume household activities are only done by maids/ servants and will see this as insulting and demeaning.

For caregivers: The type of activity a patient can be involved in will need to be more carefully tuned to the patient’s background, and presented in ways that do not backfire.

For counselors, support groups, and NGOs: Specific suggestions and modalities for this should be included in training, so that the benefit of keeping the patients active can be obtained without making the patient react negatively. Support groups can share ideas on this to increase the database of possible activities that patients can participate in, and also ways used to cajole the patient to take part in them.

Resources and Tools to simplify activities of daily living. This is one area where manufacturers in India really need to pick up interest. Books on dementia, ageing, caregiving mention a whole array of products that are not available here. Many are designed for adults coping with their reduced abilities while living alone; in India, as elders live with their families when they become dependent, possibly the ‘market’ for such tools has been limited. Large print books, magnifiers, cutlery with holders, easy to put grab bars, pill crushers and dispensers, devices to monitor whether a door is being opened (and stop wandering)…the list is large, the availability here too low.

For caregivers: They need to understand that there may be tools to simplify life, find out the type of tools that could help, and use creativity to meet the purpose with available gizmos. Perusing books may throw up ideas; adapting them for the Indian context is the challenge. Luckily, getting handymen to make things to order here is easy; unfortunately, constructing things to good; safe finish is not so easy.

For counselors, support groups, and NGOs: Creating databases of what is available and where, sharing tips, pooling ideas and even material, highlighting the need for such artefacts–all this is stuff that can be done and would help. Support groups can be used to share ideas and disseminate information. Pamphlets with suggestions, addresses may help.

Using home-help for patients: Luckily for us in India, we are able to get paid help to assist us in our caring for dementia patients, and this is far more affordable than in other countries. Not so luckily, however, as dementia awareness is low, the strange behavior of dementia patients is very upsetting to such paid help, who often get upset/ reduced to tears, and quit within days.

For caregivers: Consider getting home help when managing the patient is getting difficult. Use community resources, such as support groups, and local chapters of ARDSI, to make sure the home help understands dementia as a disease, and the ways to handle strange/ challenging behavior. In this blog post, I share my experience and give suggestions on this.

For counselors, support groups, and NGOs: conduct short courses for home-help to sensitize them to the special needs for caring for dementia patients. Have material available in local languages. Videos that demonstrate some tools, and show some typical behaviors and how to handle them, will be a help.

Caregivers as persons. In India, caregivers are taken for granted because it is culturally expected that the family will look after the elders regardless of what changes it means. This is widely different from the cultural assumptions made in books available, where caregivers seem entitled to “having a life” and respected for what they are doing (at least nominally). Here, a caregiver saying he/ she wants a break will be treated as laziness and dereliction of duty by some people; others would avoid the person. However, caregivers are persons even here, and they tire, need breaks, need nurture. The problem in India is compounded by poor awareness about available resources, as even doctors who diagnose dementia do not warn caregivers of how caregiving will affect them, and how they can prepare themselves for this role.

For caregivers: Caregivers need to remain alert on taking breaks and having time for self-nurture is more critical here. They should not let themselves get so tired that they break down. This means being more alert on keeping siblings and relatives informed, and asking for help. This is not easy, but caregivers need to understand that without this, they will not be able to do what needs to be done. Caregivers must also be alert on the possibility of using trained attendants, respite care, and day care facilities. If the caregiving may require major (and unpleasant) life changes, they must discuss this with others, and make changes only after examining options and feeling comfortable. A bitter caregiver cannot handle the stress of caregiving a dementia patient (it is tough enough without bitterness). At a minimum, consider availing Day Care and Respite Care facilities if available in the city.

For counselors, support groups, and NGOs: More awareness on caregiving role, more public recognition of this is a must. Availability of services to support caregivers should be publicized, especially using channels like doctors, nurses, path labs, because caregivers use these services. Counseling should be available, and this availability publicized. Doctors who diagnose the disease, or otherwise help in checkups, should have access to relevant information and enough material to provide caregivers. Support groups should be publicized. Facilities like Day Care and respite Care should be made available and publicized.

Old Age Home Placement. While in any country, any setting, the decision to place an elder in institutionalized care is a traumatic one, there is a bigger impact of this decision in India where culture demands that elders be looked after at home by their children. Placing an elder in an old age home is very unacceptable here, and often happens only after caregiver burnout/ breakdown. Further, few sufficiently good old age homes are available. Social pressure results in caregivers postponing this decision till they reach breakdown, and the patient moved in such a situation feels rejected and insulted and ashamed. A lot of advice is available in dementia books, but very little of this is relevant to India.

For caregivers: They need to be alert about the fact that the patient may need to be moved to an institution and do relevant research on options on this. Siblings and relatives should be kept informed of status and problems so that they do not pose last-minute hitches and end up with bitter remarks and accusations being flung. Discussions on possible options for caregiving modalities and locations should be ongoing.

For counselors, support groups, and NGOs: Material (such as checklists) is needed to support caregivers in deciding when they need to move the patient out, and how to make this transition less painful (emotionally, physically) for all concerned. Having clearly documented criteria and assessment modalities may reduce the social pressure of such decisions. Options for short breaks should be publicized (like respite care, day care), because at times, such breaks are sufficient to provide the relief caregivers need. Doctors attending on patients should provide timely advice on when such a move is advisable on medical grounds. Doctors should also advise caregivers on changes needed in the home environment to cope with (inevitable) deterioration of the patient’s condition.

Once an elder is placed in a facility, special care must be taken to transition him/ her comfortably and ensure continued family involvement so that the patient does not feel deserted. A lot of counseling is needed at this stage. This is currently not a focus of the systems in India, where institutions let people leave the elder and walk out after a brief handover.

For a dementia patient especially, the mental incapacity means that institutional attendants need better briefing. The patient, after all, cannot communicate like or dislikes, fears, etc., effectively, and is likely to get agitated and fearful, so smooth transition is critical here.

A dementia patient usually cannot remember later years but has memories (good and bad) of early years. Knowing enough of patient history will help attendants talk to/ distract/ entertain patients. As most patients here are unlikely to have extensive photograph albums, this gets tricky, and may need explicit debriefing sessions.

Providing integrated medical care. As dementia awareness is poor in India, even medical practitioners and hospital/ nursing home staff do not understand that a dementia patient’s mental capacity is compromised and such a patient may not be able to give correct and complete information. While they understand theory, they are not always alert enough to integrate this in suggestions they make on medical actions. This is partly because their exposure to patients clearly identified as dementia patients is low and a dementia patient may be seen as just a severe-ageing case patient.

For caregivers: Informing medical professionals about the dementia is paramount, as this may affect medical advice and decisions. For example, a patient’s inability to read may be because of dementia and not because the eye prescription is outdated. Doctors must also be asked about how the progression of dementia may affect decisions related to treatment and surgery; for example, doctors may decide that the cataract surgery should be conducted early, before the patient reaches a state when he/ she cannot understand or follow post-op precautions. Caregivers must remember to request doctors to factor in dementia while providing medical or surgical advice.

For counselors, support groups, and NGOs: Making sure the medical fraternity is alert on this is very important. Camps to teach doctors how their treatments should factor in dementia progression may help. Information should be provided to caregivers to prepare them for type of medical problems that can be encountered, along with India-specific tips on how to get the best from the medical fraternity for these.

Understanding legal and financial systems as they impact dementia and caregiving: Every country has its own laws and systems for handling medical care and insurance. Dissemination of information specific to India is a must so that caregivers and patients, already coping with problems of dementia, are not further handicapped because they did not foresee some legal requirement.

For caregivers: Caregivers must, along with all concerned parties, understand fully the legal and financial aspects related to the patient’s assets. Decisions such as opening joint accounts, re-arranging finances to make administration easier, and other such aspects should be taken well in time. This can be tricky because it means coordinating between multiple people, and made even trickier because the patient may not cooperate. Planning of financial matters, such as how treatment and care will be paid for, also need to be done.

For counselors, support groups, and NGOs: India-specific guidance needs to be made available as individual caregivers are in no position to understand options and limitations. Caregivers may need services for handling legal and financial matters.

Understanding last wishes. Death is morbid in any society, and often children do not know what the parents would have wanted in case of brain death, or death. This is quite a problem in India where an elder may be very offended/ hurt is a child asks anything about this–most children will not.

For caregiver: Use the services of counselors to understand the patients wishes if possible. Discuss with siblings and other important/ close relatives what must be done in such a case, so that if a decision needs to be taken in haste, it does not cause conflict or blame later.

For counselors, support groups, and NGOs: Provide resources and help to caregivers to understand types of decisions and means to discuss these with the patient and siblings and document them. Legal, insurance, living will type of aspects should be clearly understood. Specific and generic help on these should be available. Counselers and support groups should alert caregivers about the need to do these in time.

Please share your thoughts below to help make this a useful discussion, thanks!

(This page was published as a blog entry before it was moved here. To see the comments of readers on the blog entry, you can click here)

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Resources: If you want to help caregivers/ spread dementia awareness

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