This site, Dementia Care Notes, provides information on various aspects of dementia and caregiving, especially as relevant in India, and includes resources, presentations for downloads, interviews with caregivers, and links to news articles. Information on the site is presented from a caregiver perspective; it is not a medical site, and visitors are advised to consult a medical practitioner for diagnosis and medical advice as relevant.
Here are some common questions about the site’s relevance for various profiles of users, and how to use the site. (Visit the home page for an introduction to the site, and the ‘a personal note‘ page to know more about the person behind the site.)
- I’m not sure this site can help me…
- My relative is a normal elder with no dementia. In what way can this site help me?
- Can your site help us look after “difficult” elders who have normal memory loss but no dementia?
- My only concern is getting a trained attendant for my relative. Can you help?
- We managed to get an attendant but our problems only seem to have increased. Can you help?
- I am a dementia caregiver but not from India. Is your site only for Indians?
- My close relative in India has dementia. I live in the USA. Can your site help me?
- I have friends who are caregivers. Can this site help me understand their problems or help them?
- I am a volunteer/ development worker/ professional in dementia care. Your site seems aimed at home caregivers. Is there anything here that would be useful for me?
- As a home caregiver, what can I expect from this site?
- My concern is memory loss…
- I want to know the best way to use the site…
- I am a caregiver and already overwhelmed. What is the fastest way I can get something useful from the site?
- I am not living in India, but am concerned about care for a patient in India. What should I keep in mind while going through your site?
- I am not an Indian caregiver, and have no connection with India. What should I keep in mind while going through your site?
- I have visited your site earlier. How can I find out what has been changed since then?
- Is it possible to print the information on the site?
- Can I give this information to others?
- Do you post frequent updates on dementia/ care in India?
- I want to help you…
Any other questions about the site? Contact us at:
I’m not sure this site can help me…
My relative is a normal elder with no dementia. In what way can your site help me?
Some concepts on this site are common for all elder care, such as those related to planning for care, and for adapting the home to adjust to the reducing abilities of elders.(some tips on the following pages could help: Understand the caregiver’s role, Adapting the home for dementia patients )
Also, the risk for Alzheimer’s Disease and other dementias goes up with age. Understanding dementia may help you detect the symptoms in an elder at an early stage. As some types of dementia are reversible, consulting a doctor in time could help your relative get appropriate treatment and lead a better life. Too often, unfortunately, people suffer from problems that could have been reversed with treatment. (check: About Dementia )
In case your relative develops an irreversible dementia over time, knowledge such as that available on this site will help you notice things in time and seek help, and will help you plan for, and provide, appropriate care.
Can your site help us look after “difficult” elders who have normal memory loss but no dementia?
While “difficult” behaviour could have many reasons, one possible reason is that this is the elder’s way of coping with confusion and memory loss. Elders who experience confusion and memory loss are often worried about what is happening to them, and this may result in their withdrawing or having mood swings or seeming “unreasonable.” Elders also manage to hide their memory loss in initial stages. Families also often assume that because the elder is able to remember some events (especially memories from their childhood or youth) there is nothing much wrong with their memory, but there are different types of memories, and an elder may be experiencing loss of one type of memory while seeming normal in other ways. The site describes memory loss and how dementia affects behaviour, and provides links that can help you understand this and seek medical help if appropriate. (check: About Dementia )
Having normal memory loss is not the same as having “dementia” (which could be caused by Alzheimer’s or any of the several diseases that cause dementia). However, even if an elder does not have dementia, families can find it easier to live with them and help them if they understand how to communicate with someone who is frustrated or upset because of memory loss; this site provides pointers to relecant skills. (check: Caregiving essential toolkit).
Another important factor is that increasing age is a risk factor for dementia. Awareness about dementia may help you seek help in time. In addition to material on dementia and memory loss, this site includes several interviews and links to other caregiver stories where you can see how dementia appeared initially, and how it progressed. (check: Voices: all)
My only concern is getting a trained attendant for my relative. Can you help?
To contact possible sources for trained attendants, check our resources pages at: Caregiving resources in India and City-wise dementia care information.
Unfortunately, though, it is very difficult to get attendants in India who are trained for dementia care. It is also very difficult to retain such attendants. Often, it is easier to get a normal attendant and train this person for dementia care. Families that are familiar with dementia care are able to do so.
Please check out our page Using Trained Attendants for Dementia Home Care for various aspects of using attendants effectively.
We managed to get an attendant but our problems only seem to have increased. Can you help?
Often, even attendants who are supposed to be trained are unable to handle dementia patients unless they are oriented for the job. Another factor is that attendants usually provide care depending on the quality of care that they think the family expects.
One aspect to handle therefore is ensuring that the family members understand dementia care concepts and use them while dealing with the patient. Attendants working in an environment where family members are comfortable with dementia care are more likely to provide better care. Family members can pick up the necessary skills by attending caregiver trainings (you can check our City-wise dementia care information page) or by reading books or the material on this site. While all pages on the site are helpful, check Caregiving for dementia patients, and especially Caregiving essential toolkit.
Families also need to orient the attendant for the patient’s care, and to take steps to adjust to the attendant. They need to ensure safety and security, and know how they need to supervise the attendant. Our page Using Trained Attendants for Dementia Home Care discusses aspects like selecting an attendant, orienting the attendant, adjustments required by the family, safety and security issues, supervising and counselling the attendant, and handling the attendant’s absence.
I am a dementia caregiver but not from India. Is your site only for Indians?
The basic concepts underlying dementia care are common across all caregivers, and are covered on the site. These include explanations of dementia and how it impacts behaviour, and various aspects of care, such as planning care, acquiring the required skills, coordinating care with the family, taking help from others, and coping with the emotional fallout. The site includes resource pages and caregiver stories to help visitors understand the challenges others faced and how they handled them. (Various menu options relevant for all caregivers: About Dementia , Caregiving for dementia patients, Other dementia/ caregiving resources)
Regarding the India focus, this site chooses India-specific examples and its resource pages focus on India to supplement the generic information.
Dementia care in India is characterised by poor dementia awareness (in society and even in the medical fraternity), poor acceptance of caregiving as a role, and very little institutional support, which results in patients not getting diagnosed and in caregivers never getting trained on skills that would make care easier and more effective. Dementia is often confused with old age.
The site’s examples and stories keep this type of care environment as its focus, and so the site is particularly useful for any environment where awareness of Alzheimer’s and other dementias is poor, and/ or where caregiving is not recognized as a role that requires special skills. India is not the only country with such problems; similar challenges are faced in most developing countries, such as Sri Lanka, Pakistan, and Bangladesh. Even in countries where dementia awareness is higher (such as the UK and the USA), there are families and communities where persons may be facing similar problems and could benefit from the caregiver resources and stories shared on this site. Caregiver voices can be read here: Voices: all.
My close relative in India has dementia. I live in the USA. Can your site help me?
Long-distance caregivers (remote caregivers, overseas caregivers), especially caregivers living in another country, need to understand long-distance caregiving as well as the cultural setting of the patient and care in India. This aspect is covered on the site in our long-distance caregiving page.
I have friends who are caregivers. Would this site be useful to me?
Yes, you can use the site to understand what dementia care involves, and to see how caregivers can be supported. Even small, considerate actions can make a real difference to the quality of life of a caregiver or a patient.
The following link may be paticularly useful to you: How relatives/ friends/ colleagues can help.
I am a volunteer/ development worker/ professional in dementia care. What can this site help me with?
The site can help you understand enough of the home caregiving situation to make you more effective in helping patients and their families.
In India, almost all care of dementia patients is done at home. Even when families avail services like day care and respite care for their patient, the professionals supporting such services need to understand what home care has involved, because families remain primarily responsible for the patient, and take decisions related to the patients. Helping patients in an institutional setting cannot be separated from what home care of patients has involved. Also, home caregivers need support.
This site can be used by you to get a good understanding of the environment and challenges of home care. Caregiver stories and other anecdotes and examples and suggestions will sensitize you to pressures and agonies faced by caregivers.
Use the links under Caregiver voices to understand the caregiver experience. Also, get an overview of dementia home care here: Care of loved ones in home setting.
As a home caregiver, what can I expect from this site?
The entire site is designed from a caregiver perspective, and its purpose is to provide a caregiver with the range of information needed to understand what the patient is undergoing, and how to handle it effectively, with less stress.
In addition to several information pages that include anecdotes and illustrations, the site provides links to multiple resources. It also includes plenty of caregiver stories and interviews so as to provide a visitor access to a “community” of caregiving experiences.
If you are interested in knowing how to navigate the site, see the answer here.
My concern is memory loss…
I am scared my spouse/ parent has Alzheimer’s. Can this site help me?
Yes, you can use the site to get an idea of dementia symptoms, and understand why a diagnosis is important, and how to go about it. You can also get links to resources to read more. Information on organisations you can contact for evaluation is also available. (check: About Dementia ) When in doubt, however, it is always better to consult a specialist, as sometimes what seems like Alzheimer’s to a layman could be symptoms caused by medical conditions that can be treated.
What can I do if someone I know has memory loss?
Memory loss may or may not be a sign of dementia. You can use this site, and any of the authoritative links in our resource sections, to understand whether this person’s memory loss is a serious concern. (check: About Dementia ) When in doubt, however, it is always better to consult a specialist, as sometimes memory loss can be caused by medical conditions that can be treated.
If you are not sure how to tell the relatives of this person that the memory loss may need investigation, you can give them some documentation on dementia so that they can decide for themselves. This interview here describes such a scenario: A family recognizes dementia
Where can I get information on memory loss?
Some information is available on our pages on dementia (check: About Dementia ) but for a more complete coverage of memory loss, please visit one of the authoritative sites listed on our resources pages: Caregiving resources in India, City-wise dementia care information, and Other dementia/ caregiving resources.
I want to know the best way to go around using the site…
I am a caregiver and already overwhelmed. What is the fastest way I can get something useful from the site?
If you are not familiar with the basics of what dementia is, and get confused about whether Alzheimer’s is the same as dementia or different, and are not aware of the types of dementia or the stages, it makes sense to first get the basics; this will help you deal with caregiving related advice on various sites and in various books. (check: About Dementia )
If you have some knowledge of dementia, but are having problems actually communicating with the patient, and are findig yourself tired or frustrated, we suggest you begin by getting an understanding of how dementia impacts people. Often caregivers get overwhelmed because they do not know that a medical condition often described as “memory loss” actually affects the patient in multiple ways and can transform someone they knew for years into a stranger they find it difficult to relate to. A good place to start is understanding what “dementia” means in real life and how it affects people. Also, reading caregiver stories gives an idea of what other caregivers undergo. Check: How dementia impacts behaviour , caregiver stories .
Once people understand the magnitude and universality of dementia-related problems, they are able to appreciate the need to change their interactions with the patient. An approach to dementia home care is suggested here: Dementia home care: an overview. All the pages in this menu option: Caring for dementia patients provide information useful for caregivers, and specific skills to interact with the patients are part of this toolkit: Caregiving essential toolkit.
Often immediate relief can be obtained once caregivers can emotionally accept that the patient’s behavior is caused by a disease, and apply some changes in the way they communicate with the patient. Most available caregiver material then makes sense and is easier to apply.
I am not living in India, but am concerned about care for a patient in India. What should I keep in mind while going through your site?
If you are a long-distance caregiver, trying to support/ coordinate care for a dementia patient in India, we suggest you check out our page on long-distance caregiving.
In general, the site will help you understand the care environment in India, so you will have a better idea of what to expect. If you are in a country where Alzheimer’s is a well-recognized word and where there is a lot of awareness and support, understanding how different things are in India will make you set more realistic expectations of what to expect. Focus on understanding how care gets affected by poor dementia awareness and poor infrastucture. The resources listed on the site may help you coordinate care better with the persons in India who are directly involved with the care of the patient you are concerned with. Sometimes persons in India are not aware of the (admittedly scant) facilities available, even in their own cities. Check: Caregiving resources in India, City-wise dementia care information
Conflicts between persons in India and “distance caregivers” or “overseas caregivers” are common, and caused by communication gaps; reading caregiver stories and interviews here will help you make sure you do not face similar situations. Check: Coordinate caregiving between family members, Conflicts in the family over dementia care. We plan to add pages on issues to consider while applying generic dementia caregiving knowledge (from countries where awareness is high) to a situation such as India; meanwhile, the following blog entries in a personal blog could be useful: Dementia caregiving in India: some preliminary thoughts part 1 and part 2.
The page on long-distance caregiving provides a framework for someone outside India who wants to support/ coordinate a dementia patient’s home care in India.
I am not an Indian caregiver, and have no connection with India. What should I keep in mind while going through your site?
The site’s information would be useful as such to any caregiver. The only things that may seem strange to you are the caregiver stories or sections that discuss the paucity of information on dementia and caregiving; these may not be directly applicable for your case.
However, unfortunately, even in countries where awareness is relatively higher, not all members of the families know enough about dementia, and some of the problems faced by dementia caregivers here in India may resonate with you and give you some insight.
The resources specific to India will not be relevant for you.
I have visited your site earlier. How can I find out what has been changed since then??
Visit our update log which lists additions (e.g. new pages, interviews,presentations) and significant changes made to this site.
Is it possible to print the information on the site?
Yes, there is a “print” icon on the right sidebar which you can use to print the pages. If you have a PDF convertor installed as a printer on your machine (such as Cute PDF), you can even use it to “print” a page to PDF.
Can I give this information to others?
Yes. You can share any page by using the site’s “share” buttons on the right sidebar, and at the bottom of every page/ post.
Additionally, all information on this site is published under a Creative Commons licence BY-NC-SA; it can be used for non-commercial purposes so long as it is attributed properly (attribution is to “Swapna Kishore”). Read more about the license here: Creative Commons license BY-NC-SA. If you have more questions, please contact us at:
Do you post frequent updates on dementia/ care in India?
The site is regularly updated with new information that is relevant. New pages are added on topics (you can send us suggestions), and new links are added to pages. The resource pages are updated whenever we get new information.
We also have a Facebook page that could be useful for persons involved in dementia care: Visit our Facebook page here.
I want to help you…
Great! Please write to us, and let’s discuss. Email us at:
More questions? Use the comments section below, or write to us at:
