Frequently asked questions about the site

The DEMENTIA CARE NOTES® website provides information on various aspects of dementia and caregiving, especially as relevant in India, and includes videos, links to resources and organizations, presentations for downloads, and interviews with caregivers. 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. Also, some answers to commonly asked queries. (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.)

Any other questions about the site? Contact us at:
dementiacarenotes @ gmail dot com

Please tell me how this site can help me, given my profile…

I am an overwhelmed/ worried home caregiver. What is the fastest way I can use this site

Start with some essential basics if you know nothing about dementia: dementia diseases, symptoms, stages, and impact on behavior. Check: About Dementia for dementia basics, especially How dementia impacts behavior. Often caregivers do not realize how much dementia affects the person, and so they find themselves unable to understand or cope with the changed behavior, and this increases the sense of overwhelm. This foundation will make all care-related advice easy to understand and apply.

Once you get some better appreciation of the situation, you will be able to see what care needs to be done. The overall 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. Specific skills to interact with persons with dementia are part of this toolkit: Caregiving essential toolkit: you will find that understanding how to improve communication and how to help with daily activities will often provide a lot of relief, as will understanding how to cope with changed behavior–all these are part of the toolkit.

Many overwhelmed caregivers also find it very helpful to read real-life accounts of other caregivers. caregiver stories .

As you start applying some basic changes and seeing some improvements, you can explore other parts of the caregiver discussions, especially those related to quality if life, stress, and how to get help and services.

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My close relative in India has dementia. I live in another city/ another country. Can your site help me?

Long-distance caregivers (remote caregivers, overseas caregivers), especially caregivers living in another country, need to understand long-distance caregiving. They also need to understand the cultural setting in India and the care environment here. The page on long-distance caregiving provides a framework for someone in another city/ outside India who wants to support/ coordinate home care for a person with dementia in India.

In general, the site will help you understand the care environment in India. This will give you a better idea of what to expect. If you are in a country where Alzheimer’s is a well-recognized word, you need to know how different things are in India so that you have realistic expectations. Focus on understanding how care gets affected by poor dementia awareness and poor infrastructure. The resources listed on the site may help you plan and coordinate care better. Check: Caregiving resources in India, City-wise/ region-wise dementia care information

Conflicts between persons in India and “distance caregivers” or “overseas caregivers” are common. These happen because of communication gaps. You can read caregiver stories and interviews on this site to see the typical issues faced. Check: Coordinate caregiving between family members, . The following blog entries from a personal blog could also be useful: Dementia caregiving in India: some preliminary thoughts part 1 and part 2 .

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I am not an Indian caregiver. How should I use this site?

The site covers basic concepts underlying dementia care. These topics are common across all caregivers. They include explanations of dementia and how it impacts behavior, 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 stress. 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 in its discussions. Dementia care in India is characterized by poor dementia awareness in society and even within the medical community, and caregiving is not recognized and respected as a role. Diagnosis is difficult, and there is very little institutional support for care. The site’s examples and stories are written assuming such poor awareness and poor levels of support. So the site is particularly useful for any environment where dementia awareness is poor. India is not the only country with such problems. Similar challenges are faced in most developing countries, including India’s neighbors like Sri Lanka, Pakistan, and Bangladesh. Even in countries with better dementia awareness (such as the UK and the USA), some persons may be facing similar problems. They may benefit from the caregiver resources and stories shared on this site. Caregiver voices can be read here: Voices: all.

If you are not familiar with India, you may find it strange to see caregivers discussing situations that show the poor dementia awareness and support. However, unfortunately, even in countries where awareness is higher, not all family members know enough about dementia. Some of the problems faced by dementia caregivers in India may be similar to what you face and the discussions here may give you some useful insight.

The site’s resource pages focus on India to supplement the generic information.These may not be relevant for you.

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My relative is a normal elder with no dementia. In what way can your site help me?

Some topics discussed on this site are common for all elder care. Examples are topics like planning for care, and making changes at 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 possibility of getting dementia goes up with age. If you are looking after an elder, you need to be alert on dementia symptoms so that you can detect them at an early stage. You can then get appropriate advice and treatment. (Check: discussions on risks on our Diagnosis, Treatment, Prevention page). In case your relative develops an irreversible dementia, you can use information presented on this site to plan for and provide suitable care.

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Can your site help us look after “difficult” elders who have normal memory loss but no dementia?

“Difficult” behavior can happen for reasons. For example, in some forms of dementia, changed or difficult behavior is an early symptom (not memory loss). Also, suppose an elder is facing problems in memory or in his/ her cognitive abilities. In such a case, the “difficult” behavior may just be the person’s expression of frustration. It could be a way the elder copes with confusion, memory loss, or other reduction in abilities and understanding. For example, elders who experience confusion and memory loss get worried about what is happening to them. So they may withdraw or have mood swings. They may seem “unreasonable.” Elders often try to hide their memory loss and other problems in initial stages. Families may assume that because the elder can remember some events (especially memories from their childhood or youth), their memory is fine. Family members may not realize that there are different types of memories, and that the elder may be experiencing loss of one type of memory but not others. The site describes how dementia affects behavior. It provides links to understand this and seek medical help if appropriate. A discussion on how dementia impacts behavior is on this page: How Dementia Impacts Behavior. For more topics to understand dementia, see various pages in this section: About Dementia.

Having normal memory loss is not the same as having “dementia.” And most persons get some memory problems and other problems in their abilities as they grown older, even if they don’t develop 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. Some suggestions and skills discussed on this site could be helpful for this. (check: Caregiving essential toolkit).

Increasing age means a higher risk for dementia. Awareness about dementia may help you notice problems and seek help in time. This site has material on dementia and memory loss. It also includes several interviews and links to real-life caregiver stories; you can use these to see how dementia appeared initially, and how it progressed. (check: Voices: all)

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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 you can support caregivers. Even small, considerate actions can improve the quality of life of people with dementia and their caregivers.

The following link may be particularly useful to you: How relatives/ friends/ colleagues can help.

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I am a volunteer/ development worker/ professional in dementia care. What can this site help me with?

In India, almost all dementia care is done at home. You can use this site to understand the home caregiving situation, and thus be more effective in helping persons with dementia and their families.

Professionals managing services like day care and respite care also need to understand home care issues and realities because families remain primarily responsible for the person, and will be taking decisions related to the person. Helping dementia persons in an institutional setting cannot be separated from what home care of the persons has involved.

This site provides 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.

Another possible reference for dementia care volunteers is at the blog of Swapna Kishore which includes an entire section to discuss areas where volunteers can contribute. This also has documents that could be useful (such as to set up a support group): Resources for volunteers helping caregivers (opens in new window).

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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. The site will also help you understand why a diagnosis is important, and how to get a diagnosis. Check the multiple pages in our section: About Dementia . Learn about the dementia resources for persons/ organizations in the section: Resources for dementia and care). Please remember that when in doubt, it is always better to consult a specialist. This is important because what seems like Alzheimer’s to a layman could be symptoms of a medical problem that must be treated.

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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 the links in our resource sections to understand more about when memory loss. (check: About Dementia ) When in doubt, however, consult a specialist, as sometimes memory loss can be because of medical problems that can be treated.

If you notice memory loss in someone but don’t know how to tell the relatives of this person may need investigation, you can give them some documentation on dementia so that they can decide for themselves. This interview describes such a case: A family recognizes dementia

For a more complete coverage of memory loss, please visit the authoritative sites or contact the national or regional organizations listed on our resources pages: Caregiving resources in India, City-wise/ region-wise dementia care information, and Other dementia/ caregiving resources.

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Tell me about the Hindi version. What does the Hindi site contain? Is the Hindi site an exact translation of this English site?

The Hindi version of the site is at Dementia Hindi. This Hindi site somewhat smaller; and corresponds to the English site as follows:

  • Almost all pages in the About Dementia and Caring for dementia patients sections have corresponding pages on the Hindi website. These pages provide information on dementia and related caregiving, and are extensive and detailed.
  • For the Caregiver interviews and voices section, summaries have been provided on the Hindi website, along with links to the English site
  • For the Resources section, India-specific organizations and Hindi resources on the Internet are included in the Hindi site. City-wise pages have not been duplicated on the Hindi site, but links to the English website city pages have been provided.
  • For the Downloads section, the corresponding section of the Hindi site provides links for videos/ downloads available in Hindi. It includes links to the English website for information on videos/ downloads available only in English.

The pages of the Hindi site correspond closely in structure and content to the English site. But they are not a strict translation. They have been rewritten in everyday Hindi to convey the information in simpler ways.

The update log for both sites is maintained at the English site.

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I need some service/ help for diagnosis/ care…

We keep getting queries asking us for appointments for diagnosis or wanting us to send attendants and so on. Please be clear, Dementia Care Notes is not a medical site, and not a service provider. We do not have any facility that provides any services or facilities. We do not have doctors or other experts who can assess someone for dementia. We do not provide any medical advice or opinion. We do not provide home nurses or run an agency or recommend any agency. We do not have a day care or respite care. Dementia Care Notes is just an online resource for sharing information with caregivers of persons with dementia, with special focus on dementia home care in India.

Below are some general suggestions that may help.

On trained attendants/ home nurses/ maids for home care of a person with dementia.

It is very difficult to get reliable attendants in India for dementia home care. It is also very difficult to retain such attendants. Often, it is more practical to get a normal attendant and then train this person for dementia care of your relative. Families also need to orient the attendant for dementia care. They have to make an effort to adjust to the attendant. They need to ensure safety and security. They must know how to supervise the attendant. Our page Using Trained Attendants for Dementia Home Care discusses all such aspects, including 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.

Another factor is that attendants usually treat the person with dementia the way they see the rest of the family treat the person. If many family members act irritated or impatient with the person with dementia, so will the hired attendant. Most attendants provide care depending on what they think the family knows or expects. You have to make sure that all family members understand dementia care concepts and use them while interacting with the person who has dementia. Attendants will provide better care if everyone in the family is comfortable with dementia. Family members can learn the necessary skills by attending caregiver training sessions. While all pages on the site are helpful to learn necessary care skills, you can start by checking Caregiving for dementia patients, and especially Caregiving essential toolkit. For resources in your city for caregiver training and other dementia support, see our City-wise/ region-wise dementia care information page.

Please note: Dementia Care Notes does not operate any agency for attendants nor do we recommend any existing agency. However, we have some resource pages you can use to locate organizations that support persons with dementia or with senior living. Tips to locate support organizations are included. Again, please note that we do not endorse or recommend the organizations listed on our resource pages. Check our resources pages at: Caregiving resources in India and City-wise/ region-wise dementia care information. Information of such services keeps changing, so please confirm the reliability and suitability yourself. If you note any errors in the provided information, please let us know.

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On full-time care/ respite care/ assisted living facilities for someone with dementia.

To place someone with dementia in a short-term or long term respite care facility, you need to evaluate the proposed facility carefully. Keep in mind the personality and status of dementia. A facility may be very suitable for one person but not good for someone else. Please check our page Using/ evaluating various dementia care services for the type of services that may be available and how to evaluate them.

Unfortunately, there are very few specialized dementia homes in India. Please note that Dementia Care Notes does not operate any old age home for persons with dementia. we do not recommend any existing home. However, our resource pages have information on dementia respite care services available in India. Check the resources listed here: Caregiving resources in India: Dementia day care, respite care, and long-term care, along with contact links. Our resources pages are at: City-wise/ region-wise dementia care information. Information of such services keeps changing, so please confirm the reliability and suitability yourself. If you note any errors in the provided information, please let us know.

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On help with dementia diagnosis/ behavior assessment/ medical advice.

Please consult an expert in your city or nearby. Please contact a senior doctor who specializes in dementia. You may be able to locate a specialist in a major hospital that has a neurology, psychiatry, or geriatric department. You can also consult a chapter of ARDSI ( Alzheimer’s and Related Disorders Society of India) for advice or names of doctors. Some dementia-specific resources are also listed on this site. You can also see our resources pages at: Caregiving resources in India and City-wise/ region-wise dementia care information. (Information of such services keeps changing, so please confirm the reliability and suitability yourself. If you note any errors in the provided information, please let us know.)

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I want to know more about how I can use the information on this site…

Is it possible to print the information on the site?

Of course. You can use your browser’s print option. Also. there is a “print” icon on the right sidebar which you can use to print the pages.

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Can I give this information to others?

You can share the link of any page of our site Dementia Care Notes and its Hindi version, Dementia Hindi, by using the “share” buttons on the right sidebar, and at the bottom of every page/ post.

You can also post small excerpts of our pages and other content on your own sites/ blogs, but you should include a working link back to the full article on this website and acknowledge “Swapna Kishore” as the author. The excerpt size must remain within the accepted norms of “fair use” as understood in terms of copyright violations. (This would typically be a paragraph, but contact me if you are unsure). Please note that you may not duplicate a full page or a significant part of a page on any media without explicit permission from me.

You may not use material on this website for any commercial purpose. For uses such as creating derivative works (by altering, transforming, or building upon the material on this website), please contact us for licensing information and other such things.

If these terms are unclear, or if you have more questions, please contact us. Our contact information is available at:Contact information/ form page

Please also note that DEMENTIA CARE NOTES is registered in the name of Swapna Kishore with the Trade Marks Registry, Govt. of India. This mark may not be used in any way that violates this registration.

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Do you post frequent updates on dementia/ care in India? I have visited your site earlier. How can I find out what has been changed since then?

The site is regularly updated with new information. Discussions are modified to include new subtopics and add aspects based on queries we get and on work going on in the dementia and caregiving fields. New pages may be added on topics. New links are added to pages for relevant articles, published papers, videos, books, etc. The resource pages are updated whenever we get new information.

As all pages are regularly reviewed and updated, we recommend that you read the pages of interest again, and also check the menu bar or site map to locate pages that could be useful to you.

However, if you want a quick overview of only the significant changes, see our site update notes. This lists significant changes made to the site content since April 2014, such as additional pages, major content coverage changes, etc. Small changes, small additions of new sections, new links, etc. are NOT listed in this.

We also have a Facebook page that could be useful for persons involved in dementia care: Visit our Facebook page here.

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How often is the Hindi website updated?

The Hindi website is updated in batches to be brought up to date with the changes made in the English website. Typically, the English website will be slightly more up-to-date and detailed. This is especially true of topics that are not of common interest.

The city-wise resources, which are mainly contact information of various resources in India, are maintained only on the English site. This has been done to avoid duplication of data maintenance effort.

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I want my book/ infographic/ facility/ service listed on your site or I want to create free content for you or I can offer you affiliate fees…

This type of query includes questions like: I have written a very useful book/ created a good website/ infographic/ I provide a very useful service. I want you to include it on your website. OR
I am willing to write articles for you free if you give me a backlink to my site. OR
Please include my book/ service (or whatever) on your site. I’ll give you associate fees for the sales I get because of your link. OR
I want an appointment with you to explain why you should include my facility on your site. OR
I sent you a link to include but you have not included it. Does anyone even check the emails?

About free content creation, backlinks, commissions: All content on this site is created by the site-owner. We do not want or need content from others. We do not trade in links/ backlinks of any sort. We are not interested in publishing free articles in exchange for back-links, and we are not interested in commissions, etc. All suggestions for inclusion are only evaluated in terms of how they may benefit site visitors. Also note that repeatedly insisting that you will give money or gift for getting listed on the site could make us suspect the genuineness of your service or product.

Suggestions we welcome: We welcome suggestions on good, authoritative, and useful material that could help dementia caregivers in India. These could include updates on resources in India, or links to authoritative material on dementia or care in various Indian languages. Links to online support groups or online resources for understanding various types of dementia. Links to meaningful discussions on topics relevant for caregivers, such as tips on handling behavior problems. Books that can help caregivers (so long as they don’t present an unrealistic picture or advocate unproven methods). Videos, blogs, and personal stories on the experience of dementia (written by someone with dementia, or by a family member of such a person) are welcome, too, especially if they are about someone in India.

Evaluation process and criteria: All received suggestions are respectfully and carefully evaluated. But before sending something, please read the explanation below to see fitment of what you are suggesting.

The Dementia Care Notes website is aimed at dementia caregivers in India. We only include material we consider suitable for this profile. If any of our topic discussions or resource pages can be improved by including your suggestion, your suggestion will be considered seriously and honestly.

Some things to keep in mind: data/ discussion should be relevant for dementia care in India. Often we get suggestions for including material irrelevant for care in India. Examples are legal advice or service providers or resource directories of facilities in another country. Or infographics presenting data of another country. We only consider material that would help overwhelmed caregivers handling dementia in India. The material may also be useful for others, especially caregivers in culturally-similar countries. But it must be useful for persons in India. The most common reason for non-inclusion of a suggestion is getting information of a service that is available only for persons in the USA.

Also, note that Dementia Care Notes is not a medical site. We do not include any medical information, such as suggestions or comments on specific drugs. We do not include any material on untested therapies. We do not link to sites that recommend unproven alternate therapies. Material claiming that some specific food or herb or protocol can “prevent” dementia will not be included. For discussions on dementia-causing diseases and risk reduction approaches we only link to authoritative sites and only mention scientifically proven approaches.

All suggestions are considered using the criteria given above. We may include it or send back some queries. If your suggestion has not been included in two months, and you have not received any query from us for more details, it is most probably because your suggestion does not fit our site needs. Please read the above questions and answers carefully before deciding to send a reminder. It will save you time and save us time.

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I am concerned about dementia care, and would like to help you/ contribute to this site. How can I do that?

Great! Please write to us, and let’s discuss. Contact us: Contact information/ form page.

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More questions? Contact us using the Contact information/ form page.

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Page/ post last updated on: September 26, 2016

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