Concerned organizations and volunteers often want to tap the potential of the Internet and create a "good" website that can help dementia awareness and support. However, in practice, they face problems and may not be able to reach their target audience and meet their intended purpose. This presentation was made in the International Conference on “Advances in Dementia” & “XXI National Conference of ARDSI”, held on 22nd, 23rd & 24th September, 2017 at Kolkata (India). This presentation shares key issues related to creating and maintaining websites. It focuses on practical ways to approach website creation including factors to consider, decisions to take, components to plan for, how to proceed, and so on. The aspects to consider while setting priorities for website content are discussed. Common problems faced are discussed, and practical suggestions offered. Topics include Audience and Purpose, Content Creation and Presentation, Maintenance and Enhancements, Other Issues, and Moving Ahead.

1. Using the Internet for Improving
Dementia Awareness and Support
Presented by Swapna Kishore (cyber.swapnakishore@gmail.com)
International Conference on “Advances in Dementia”
& “XXI National Conference of ARDSI”
22nd, 23rd & 24th September, 2017, Kolkata (India)
…Practical suggestions and priorities relevant for
Indian audiences…

2. About this presentation
• We all want to “create a good website” or “have a useful website”
– But what does this mean? Who do we want to help and how? What factors are
important to achieve that?
• This presentation shares key issues related to creating and maintaining
websites
• Topics:
– Audience and Purpose
– Content Creation and Presentation
– Maintenance and Enhancements
– Other Issues
– Moving Ahead
© 2017, Swapna Kishore 2
(Note: This is the second presentation on the topic of using the Internet. A related
earlier presentation discussed the reach of the Internet, the possibilities using it
for awareness and support, and broad concepts for this. This earlier presentation
is also available on Slideshare)

3. AUDIENCE AND PURPOSE
© 2017, Swapna Kishore 3

4. Many possible audiences
Many possible purposes
Which type of purpose (s) to focus on?
• Showcase organization information
• Share research papers, academic
discussions
• Connect to professionals for diagnosis,
treatment, and counselling
• Provide a forum to share dementia and
care experiences
• Encourage brain health/ risk reduction
• Spread awareness among laypersons
• Support for dementia care
• Provide resource directories
• Empower volunteers
© 2017, Swapna Kishore 4
Which audience profile(s) to aim
for?
• International/ local community
of dementia workers
• Academics/ Professionals
• Family caregivers
• Persons with dementia
• General public
• “advocates” needing material
• Selected sections of society
– E.g., based on income, literacy,
location, technology and
devices…
We need to be clear about the audience and
purpose to create an effective website

5. Purposes covered in this Presentation
• General Awareness: To spread public awareness
– To improve chances of early diagnosis and to
improve societal support for families. May also
increase pool of persons who may get involved in
more dementia work
• Care Support: To support persons with
dementia and their families
– To reduce their stress and problems, improve care,
improve quality of life for the person and family
© 2017, Swapna Kishore 5

6. General Awareness:
The target audience
• People who face problems but don’t
know it is “dementia”
• People who have heard of dementia,
but are swamped by misinformation
and myths
• Other general and unreached
audiences:
– General members of society. People in
remote areas. Illiterate persons. Poor
persons. People in all age groups,
because everyone needs to know enough
to not criticize the person or caregivers
© 2017, Swapna Kishore 6
90% of families with
dementia remain
undiagnosed. They
may not look for/
read “dementia”
information

7. General Awareness:
Attracting the audience
• People are busy and there is information overload. Multiple
causes, products and services compete for attention. And, of
course, there is social media
• People choose things they consider useful or interesting.
They also have shorter attention spans
– They click on what may give them some satisfaction/ gratification/
solutions.
– They notice things they can relate to in some way.
– They ignore what seems unconnected to their lives.
• Awareness material needs to attract persons who may have
no curiosity about “dementia” and are, instead, interested in
other topics (film stars, cricket, corruption stories ☺ )
© 2017, Swapna Kishore 7

8. General Awareness:
What type of material can help?
• If they don’t know “dementia”, they will not look for
material using labels like “dementia” or “Alzheimer’s”.
• But they may be interested in material on symptoms they
worry about, like “wandering”, “delusions and
accusations”
• Possibilities to consider
– Present simple-to-understand material with examples people
can relate to
– Convey gravity of dementia, enough to make people think of
contacting doctors
– Give prominent coverage to more worrying symptoms and
changed behaviors
© 2017, Swapna Kishore 8

9. General Awareness:
Checking effectiveness of material
• Test the content’s understandability:
– Show it to a sample audience similar to the target, and then
ask them questions to see what they understood and what
they did not
– “very nice” and “very useful” is not feedback on usefulness
• Use feedback of how site was used, and what it changed
for users
– Who views the material (this needs data and analysis)
– What sort of queries do people contact for (contact forms,
emails, phone calls)
– Do any users say the material led them to go to a doctor?
– Do any users ask how they can help a family coping with
dementia after visiting the site?
© 2017, Swapna Kishore 9

10. Care Support:
What do people need or look for?
© 2017, Swapna Kishore 10
• Applicable when person/ family knows it is dementia
• Broadly
– Understanding dementia and its impact (what is going on,
why, and what to expect now and later)
– Understanding what can be done (how to care, how to plan,
how to help with ADL, cope with changed behavior, etc.)
– Knowing about available services and support for relevant
aspects (medical, home care support, products, training, etc.)
– Some way to reach someone who can give more information
or help more

11. Care Support:
Information or Solutions?
© 2017, Swapna Kishore 11
• Do families want information or specific solutions?
– How overwhelmed or busy is the caregiver? How urgent is
the situation that needs solutions?
– Does the caregiver see the situation that needs more
attention and thought, or something that a trained
attendant or a medicine will resolve?
• Observation:
– Online seeking is more by family caregivers with little or
no access to dementia organizations. They may also have
no time or money to visit experts and dementia setups

12. Care Support: People want solutions
They also want a sense of safety
• The first concern of persons who contact me is usually for
solutions to imminent problems. Only a few are looking for
general understanding or long-term care planning
• But once their immediate need and anxiety subsides, they start
looking for more. They also want a sense of comfort and
security that they will be able to get more information and
solutions easily in future
– They find it comforting that the site has much more information
(even though they never read it).
– Some comments I hear often “At least I know I can always refer to
your site and read more if I need it” and “At least I know I can reach
you in future”
• Speedy and reasonably detailed responses to queries adds to
their sense of security
© 2017, Swapna Kishore 12

13. Care Support: Queries indicate
audience concerns
© 2017, Swapna Kishore 13
Typical queries/ concerns show:
• Utter cluelessness after diagnosis
• Immediate need for care home/ attendants, or problems with existing
attendants (“send one tomorrow”)
• Very difficult-to-cope-with changed behaviour (“can’t take it any
more”)
• Family issues and conflicts, remote care challenges (“my brother is
not taking good care of her”, “my sister hasn’t got a clue but keeps
criticising me”, “I can’t do anything from here, but I can’t move back
to India”)
• Late stage problems, eating and swallowing, tube feeding decisions
(“she is hardly eating and the doctor says, bring her here, I’ll put a
PEG. What is a PEG?”)
Queries unrelated to dementia, often in Hindi, from males in their 20s
and 30s having memory problems at college/ work

14. Care Support: Audience profile and
queries shape content
Understanding users and interacting with them is useful input
while making decisions about content. Examples from my
experience:
• Created Hindi material
• Simplified language, added more graphics and video-based
content
• Made material available on Slideshare, Youtube
• Added content in areas such as late-stage care, long-distance
care
• Added a section for “resources for volunteers” as many users
turned out to be persons doing dementia-projects
– students, journalists, writers and movie makers, volunteers, social
entrepreneurs, etc.
© 2017, Swapna Kishore 14

15. Care Support:
Users also send suggestions
• Some users send suggestions and data
corrections. Some even offer to help.
• Such comments and queries are particularly
useful, as we can tap these users for more
feedback and comments.
– Engaging them for more discussion can provide
insight into issues they are facing
– Sometimes this results in enriching conversations
that give many more ideas for content
enhancements
© 2017, Swapna Kishore 15

16. Whatever the site purpose, make it
easier to send queries
© 2017, Swapna Kishore 16
• Only a fraction of site users send queries. We must
value such users because they need help. Their data
is also useful for improving the site effectiveness
• So, contact data should be CORRECT and easy to use
– Emails should be correct
– Phone numbers and address should be correct
– Any query sent using a contact form should reach properly
• Responses should be prompt, polite, and
appropriate. This allows a dialog with users that gives
a wealth of information

17. CONTENT CREATION AND PRESENTATION
© 2017, Swapna Kishore 17
🛈

18. Importance of content and
presentation
• Correct, usable, and friendly content is the core of a site
– “Content is King”
• Presentation and usability are also very important
– This includes things like what content gets priority, the site
layout, intuitiveness of interface, ease of navigation, etc.,
especially as users may be new to the Internet
• Often, while everyone knows content is important, this is
not consciously planned during a site’s creation
• Website usability with respect to the target audience is
often not checked.
© 2017, Swapna Kishore 18

19. What is “good” content?
• A common approach in site creation is uploading content we
think readers SHOULD know.
– We think a topic is important, therefore, we push it on the reader.
This approach is a relic of the habit of teaching a captive set of
students
• But for a website reader, any alternate site is just a click away.
– They may move away because this site is boring or irrelevant
• For a website, content needs to be offered in ways that
attract and engage the reader
• “Good content” for a site is:
– Content that attracts the target audience and engages them
– Content which, if seen by our target audience, meets the intended
purpose
© 2017, Swapna Kishore 19

20. What is “good” content?
• Correct and authoritative
• Reasonably comprehensive
• Easy for the target audience to
understand
• Suitable topics for the intended purpose
• Appropriate level of detail
• Up-to-date (outdated information is
misinformation)
• Useful
• Formats more suitable for devices and
technology used by the target audience
(e.g., mobiles, videos)
© 2017, Swapna Kishore 20
What do they
mean by
“deep bath
water” and
“bath seat”?
What are
advance
directives? I
don’t think
we have
them...

21. Content creation is typically
underestimated and under-planned
• Basic (wrong) assumption: Anyone can write
content. As a result, this is:
– Delegated to juniors
• Does not reflect expertise of practicing professionals
• Often is patchy copy-paste from multiple sources, violating
copyrights, or not relevant/ useful to the reader profile
– Collected from contributing experts without any style/
content framework, and without much informed editing
• Assumes experts can write well for the target audience
• Ignores the need for thematic similarity
• Ignores the likelihood that such an approach can lead to
overlaps/ gaps in coverage
© 2017, Swapna Kishore 21

22. Examples of content types
• Material to attract laypersons
concerned about the symptoms
• Direct debunking of typical media
misinformation and myths
• Basic information on dementia and care
• Advanced caregiving articles on specific
problems and aspects, more detailed
tips, and Q&A on common problems
• Information on useful events, training
• Information on the organization
© 2017, Swapna Kishore 22
No one in our family
will get dementia
because we add
turmeric to our food. I
read an article in the
newspaper that haldi
prevents dementia.
But that’s not what
they mean when
they say--
Why would
newspapers print
anything wrong!

23. Every word choice/ phrase affects
usefulness for target audience
• All content assumes some context
• Every phrase assumes some concepts are
already familiar to the reader
– “healthy lifestyle choices”: the words may be
simple, but will readers understand and recall
the concept?
• Vocabulary/ phrases used assumes things
– Do laypersons truly understand “cognitive
impairment”, “DALY”, “pathologies”?
– Terms like PwD can be unfamiliar to
laypersons. They are tongue-twisters and
may also be confused with person with
disability (having a glossary doesn’t help)
© 2017, Swapna Kishore 23
DALY? Do
they mean
DAILY? But
that sounds
odd here...

24. Creating understandable English
material
• To create accessible health
information, we should be
alert on readability.
• English is not the first
language for most Indians.
So clear and simple
writing is very important
when creating English
material.
– Laypersons may not
understand text-book style
or research-paper style
writing
© 2017, Swapna Kishore 24
Often, health material is not written in
ways that average adults can
understand. [1]
Fortunately, there are many guidelines
for designing and testing health
material, such as one by CDC[2].
[1]http://www.rcpe.ac.uk/journal/issue/journal_40_4/fitzsimmons.pdf
[2]https://www.cdc.gov/healthliteracy/pdf/Simply_Put.pdf
As per a 2005 household survey in
India, only 5% men and 3% women
were fluent in English
Ref: Based on https://en.wikipedia.org/wiki/Indian_English, July 2017

25. Material creation and validation
• Possible approaches:
– Experts write the articles
– Knowledgeable volunteers interview experts, document it, and get
approval
– Can have participative content creation models like wiki
• Reasons using experts for content creation is often impractical
– Experts may be too used to academic writing
– Too busy (they do have their own profession!!)
– They consider such content creation “work for juniors”
• Edit and review are essential for good content.
– This ensures correct use of English, consistency of style, match with the
site objectives, copyright aspects, more suitable for Internet searches, etc.
This needs time and effort.
– May need domain experts, professional editors, sample audiences, etc.
© 2017, Swapna Kishore 25

26. Consider Indian language material
• Often material for awareness and
support is created in English
– Even though informally, experts talk in
local languages in support groups, etc.
• Indian language material is not
considered, or is considered later
– A typical assumption is that material in
Indian languages can be created by
translating the English material
• This English-only or English-first
approach reduces the reach and
comprehension of the material. Huge
population segments are missed out
© 2017, Swapna Kishore 26
From 2001 census data, 12.6%
Indians know English
From a 2005 household survey in
India
• Men: 72% men did not speak
any English, 28% spoke at least
some English (5% were fluent)
• Women: 83% men did not speak
any English, 17% spoke at least
some English (3% were fluent)
Ref: https://en.wikipedia.org/wiki/Indian_English,
data taken in July 2017

27. Challenges while creating Indian
language material
• Indian language readers have their own levels of health
literacy, local idioms and culture, etc.
• Working in Indian languages poses some special
challenges
– Readers differ in the variations/ dialects/ vocabulary-levels
they use for the language (especially true in Hindi)
– Readers may not know some key concepts required to
understand the material
– Overall health literacy may be poorer
– The stigmas, myths and misinformation to counter may be
higher or different
– May require different local idiom, culture, examples, etc.,
than what is contained in the English material
© 2017, Swapna Kishore 27

28. Experiences of getting translations
done (Hindi)
• My experience: Using translators for my Hindi work was unsatisfactory:
– Translators used Sanskritized terms not understood by laypersons.
– Some concepts are unfamiliar to Indian-language readers, and need more
than a curt phrase. Literal/ verbatim translations can be tough to
understand.
– The translator’s unfamiliarity with dementia affected the translation
• There is hardly any authoritative Hindi discussion or standard
terminology to refer to
• My conclusion: I needed to create a Hindi version, not a Hindi
translation
– I now write my Hindi material using idiomatic phrases and familiar
examples.
– Productivity is lower (than English) because of lack of software editing
and spelling tools, transliteration foibles, lack of standard vocabulary and
terms.
© 2017, Swapna Kishore 28

29. Experiences of “professional” Hindi
translations
© 2017, Swapna Kishore 29
The Forgetfulness of Dementia
is different from that of Normal
Ageing
डिमेंडिया के कारण भूल जाना उम्र बढ़ने
के कारण भूल जाने से अलग होता ह
Forgetting the causes of
dementia is different from
forgetting the causes of ageing
Normal people forget where they
put their keys, but not what the
keys are for.
Normal people may forget where
they put their keys, but they
cannot forget who the keys are for.
सामान्य लोग यह भूल सकते हैं डक उन्होंने
अपनी चाडबयाां कहाां रखी हैं पर वे यह नहीं
भूल सकते डक वे चाडबयाां डकसके डलए हैं

30. Points to consider for Indian
language versions
• The Indian language version needs to be
checked carefully. Possible approaches:
– Feedback from the target audience.
– Review by dementia experts proficient in
the language
– Reverse-translation
(English-> Indian language -> English)
• Do a pilot project (a few pages), and
refine the process before incurring more
cost and time
• If looking at priorities across which Indian
language, one factor to consider is
“reach”
© 2017, Swapna Kishore 30
...इनमें मडततष्कीय कोडिकाओां
का क्षय, मडततष्क से प्रेरणा का
कम पारेषण तथा मडततष्कीय
कोडिकाओांके मेटाबोडलज्म के
अांडतम उत्पादों का डतथडत
पररवततन िाडमल ह।
Material needs to be
understood by average
readers. Below is a sample
that no Hindi speaker I
asked could understand
(excerpt from a Govt.
website, Oct 2015)

31. Go beyond words: The Internet
allows (and needs) “rich content”
• Content need not be plain text. Make content more
engaging and usable by using some creativity and
integrating relevant “rich content”
– Examples: Graphics, videos, audio, comics, animation,
interactive content, etc.
– Remain alert on possible limitations due to user’s hardware
• “Shareable” content may be worth exploring, such as
exploiting fondness of social media sharing
• Use of multiple formats can also overcome the literacy
barrier
– Can have audios, videos. Videos are viewed even on mobiles.
– Choose a suitable platform. Youtube, for example, reaches
more people
© 2017, Swapna Kishore 31

32. Additional feature: support forum?
• Internet can be effectively used to establish
support forums
• This is often effort-intensive as generating
momentum, ensuring proper use, and maintaining
quality and quantity of interactions is tough. The
sustained effort needed is often underestimated
• It is better to get some experience of site creation
and maintenance before considering online
support forums.
© 2017, Swapna Kishore 32

33. Presentation/ usability is very
important
• This is not about flashy colors or how “pretty” a site is
– Irrelevant addition of animation, fluttering butterflies and
pictures of roses only distracts.
• Use various presentation options to make the site more
usable by the target audience. There are many aspects to
look at, such as:
– Easy to know what the site will help with
– Easy to navigate
– Easy to read text, see (relevant) pictures, view any media on
the device the user has
– Arranged for better access to the relevant information (such
as, the most relevant information is visible most easily)
© 2017, Swapna Kishore 33

34. Content prioritizing and
presentation involves trade-offs
• Keep the target audience and purpose in mind when deciding
on topics and how prominently to put them:
– For example, do we give more prominence to showcasing the
organization, or to making life easier for a caregiver?
• Some examples are what is placed on the front page, how
simple navigation is, etc.:
– Should the front page focus on how many million PwDs are there in
India, or have pictures of an awareness walk, or should it
prominently explain how families can get help for dementia care?
– Which type of user will find the site easy to view and use?
• One possibility is focusing on unique aspects about the
organization of the help it offers.
– How does it differ from other sites the target audience may reach?
© 2017, Swapna Kishore 34

35. Content creation skills and costs
• The most basic content type of a site is formatted text. It
needs good writing by a suitable expert, good editing, data
validation/ review.
• Graphics that supplement/ illustrate the concepts in the text
are very useful. These can be of many types.
– They range from photographs or simple text put in a Powerpoint
graphics to custom-made illustrations and cartoons. They range
from using quick and cheap “homemade” solutions to contracting
work to a professional artist
• Videos and audios range from uploading a simple camera
recording to producing a professional movie with subtitles.
Costs and efforts vary accordingly.
• Approach chosen depends on the sophistication required,
available technology and skills, funds, maintainability, etc.
© 2017, Swapna Kishore 35

36. MAINTENANCE AND ENHANCEMENTS
© 2017, Swapna Kishore 36
🛠

37. A major challenge: maintaining the
site
• Often, site creation is done as a one-time activity and not
much planning is done for how the site will be maintained
or corrected
• Many organizations regularly face problems like:
– Site going down for non-renewal of domain name, hosting
account, technical glitches, hacking
– Very outdated data even for essential site components like
contact and helpline numbers, events, rate lists
– Hardly any updates, or very late updates as people forget the
site needs update, no one is directly responsible for this, or
because there is mismatch with the vendor
• Over time, sites may become less and less useful or
correct
© 2017, Swapna Kishore 37

38. Problems of outdated content
• Impression that the organization is no
longer functioning
– Such as “upcoming events” that
happened several years ago
• Inaccessible to persons who need to
contact you
– Often mistakes in address, dead phone
numbers (including “helplines”), email
ids that bounce, contact forms
– Lack of response for provided emails,
contact forms, phone numbers
• People can’t tell the organization the
data is wrong if they can’t reach it
© 2017, Swapna Kishore 38
2008? It’s 2017
now... They
have obviously
closed down...

39. Problems of outdated content
• Sites may carry data on old services that are
now discontinued
– And they may not have data on the current
services or rates, etc.
• Content may also be outdated in less obvious
ways
– Such as outdated information on dementia,
medication, laws, statistics, etc. These may not be
noticed and corrected later
© 2017, Swapna Kishore 39

40. What does maintenance require?
• Basic technical vigilance needs ongoing alertness, but can be
smoothened by using good design and tools
• The evolving needs of the Internet. Watching for trends and deciding
for each requires both ongoing vigilance and some bursts of major
efforts
• Changing organizational situation: Business situations keep changing,
so event data, own contact data, data on services provided, other
resources, etc., keep changing. This needs alertness and edits.
• Domain terminology and content keeps evolving. Decisions for this
require good familiarity with existing material and of the changes that
are happening. This can be very effort intensive but can be done in
project-like bursts
• Content enhancement can also be done for existing topics, or to
include new topics
© 2017, Swapna Kishore 40

41. Who maintains, and how?
• Depending only or mainly on vendors does not work
• The organization MUST have someone alert on the status of
the site and on the correctness of the key information of the
site
– Decide what is “key” (usually includes contact information, basic
scope of work, and the events calendar)
• Having a quick-to-respond vendor is essential
– Depending on volunteers or unreliable vendors can be a problem
• Some ability to do edits in-house can vastly improve chances
of an up-to-date site
– This is often possible if the site uses a friendly technical platform.
Often organizations don’t have a clue about this, so thinking
about this in advance is important
© 2017, Swapna Kishore 41

42. Maintenance effort should be
considered when deciding content
• The “maintenance” aspect is often ignored when deciding
content
• But if we remain alert, we can create sites that require
less maintenance
– Example: Design the content and layout to easily note and
edit the type of data that may change (could be things like
contact data, statistics, etc.)
– Use a “modular design” with no data duplication, so that any
change is quick to make
• We can also avoid content that is too difficult to maintain
– For example, curation of dementia news is often started and
then forgotten
– If comments are difficult to moderate, maybe close the
comments
© 2017, Swapna Kishore 42

43. Suggested priorities for various
maintenance elements
• Minimal/ Mandatory: Keep website up. Keep it safe from hacking. Stay in
control of the domain name, registrant name, hosting account, all
passwords.
• Highly desirable: Keep improving website to stay in step with Internet
requirements
– Mobile friendliness, Secure sites (https://)
• Highly desirable: time-sensitive data kept correct, like events calendar and
contact information
• Desirable: Maintaining basic usability of content (e.g., external links work)
• Desirable: At least some degree of publicity
• Nice to have: Content revision for major reports and changes in
terminology
– Example: adding links to latest international reports
– Removing “patient”
• Optional: Creating fresh content based on queries and changes, or to reach
new audiences. Revise target audience and purpose and redesign site for it.
© 2017, Swapna Kishore 43

44. TYPICAL SITES AND ISSUES
© 2017, Swapna Kishore 44

45. Typical things organizations try to
convey through websites
• Organizations want to create a “good” website. Content usually
considered:
– Organization information: Board and key members, mission/ vision,
history, contact data
– Showcase: Past events, news clips, newsletters, image galleries, a brief
mention of future plans
– Helpful information on dementia and care, and available services,
training, products, etc.
• The site finally produced may not be as effective as envisaged.
– Reasons include lack of clarity about what is “good”, not defining target
audience and purpose clearly, poor understanding of what is involved in
site creation, low budgets, low time availability, inability to provide
technical oversight, etc.
– Typically showcasing the organization gets more priority in the
beginning, along with some standard information on dementia (10
warning signs). Energy and funds run out by the time the rest of the
aspects are to be designed
© 2017, Swapna Kishore 45

46. Common choices and implicit
audience selection
• Standard content is:
– In English
– Landing page more on organization showcase/ events, pictures, some
brief statement of what they do
– Some menu links for sections on: event calendar, newsletters, services
and activities, media clips. contact details, more about the organization,
brief pages with basic standard information on dementia symptoms,
treatment, and diagnosis, and sometimes a download section or a video
• Often ignored/ forgotten originally are:
– Friendliness for mobile and tablet users
– Speed for low-speed Internet connections
– Non-English information in Google-friendly formats
• Implicitly excluded: illiterate persons, poorer persons, non-English
readers, overwhelmed caregivers seeking solutions, general persons
who don’t know the word “dementia” or “Alzheimer’s”
© 2017, Swapna Kishore 46

47. Common problems: the fall-in-
between-cracks website
• Budgets and expertise are a common constraint. There is a tendency
to
– Use ex-caregivers and committed volunteers for initial setup. Handover
of the new site and any ongoing maintenance work is not considered
– Use low-quoting vendors without involvement or understanding of
decisions made on choice of platform, hosts, use of resellers, etc.
• Problems faced include
– Websites never going live, and major miscommunication/
misunderstanding between parties involved
– Website is released, but cannot be edited later because the developer
gets busy elsewhere, and no one else understands what is happening.
Passwords are lost. It falls behind times. Control of the domain may also
be lost
– Conflicts with vendor may also result in loss of content or even the
domain name.
© 2017, Swapna Kishore 47

48. Common problems (contd…)
• Typical problems include
– Organizations don’t know when their own site goes down for
non-renewal, non-payment or technical glitches (For some sites,
I see this happen every year on the same date)
– Organizations don’t know when their site is hacked.
– Emails go missing because site is down/ hacked/ lapses
• Organizations find it very difficult to tell vendors what they
want. They are not able to get the changes done promptly
and properly
– The management lacks the time or skill to understand basic
aspects of their own website and its technical platform. They
don’t know how easy or difficult it is to make a change.
– Vendors quote high prices or take too long to correct data
© 2017, Swapna Kishore 48

49. MOVING AHEAD
© 2017, Swapna Kishore 49

50. A website is part of an overall
approach to reach wider audiences
• Internet-based work can increase an organization’s reach
and effectiveness.
• Especially attractive as it has wide reach, can reach
underserved, distant audiences of multiple profile, and can
include engaging material. It can be used to spread updated
information almost instantly.
• Technology use is also being increasingly supported by
governments who want to empower the public
• Use Internet presence as an integral part of overall work
approach, to help and be helped by other elements of
work done
– For example, it is a reference for caregivers and volunteers,
and a resource for handouts/ printing material. Videos
created can be shown on projectors as well as shared online.
© 2017, Swapna Kishore 50

51. Site creation involves team work
and multiple skills
• Initial concept and decisions, project kick-off
• Persons providing content and the broad framework of
content (for domain-related content, organizational events
and data, etc.). Also persons initiating the need to modify
the website
• Content creation team (writers, editors, graphic creators,
video creators, etc.)
• Technical team for technical decisions, design, uploads,
vigilance
• Someone handling the “accounts” (domain name, hosting,
etc.) and master-keeper of passwords
• Decision makers and managers for establishing and
maintaining the overall direction, getting funds and people,
planning and managing the tasks
© 2017, Swapna Kishore 51

52. Approach the work systematically
• Like any project, site creation and maintenance needs planning and
monitoring, discussions between stakeholders, plans, deliverables,
criteria for acceptance, etc.
• Using the Internet is unfamiliar territory for most organizations. So
a phased approach based on priorities is better
– Don’t aim for perfection right in the beginning
– Don’t forget the maintenance aspect.
• Important to remember are:
• Create relevant, engaging content to meet the site’s objective
• Understand audience needs and characteristics to adjust approach
• The work is ongoing because of maintenance. Plan for this.
• Also, review the work’s effectiveness with respect to the target
audience and purpose. Change the site accordingly, or revise the
target audience and purpose.
© 2017, Swapna Kishore 52

53. Thank you!
cyber.swapnakishore@gmail.com
English site for dementia caregivers in India: dementiacarenotes.in
Hindi site for dementia caregivers: dementiahindi.com
Blog for personal experiences & volunteer resources: swapnawrites.wordpress.com
Videos: www.youtube.com/user/swapnawrites,
youtube.com/user/dementiacarenotes
Presentations and documents: www.slideshare.net/swapnakishore/
(Note: A related earlier presentation on the reach of the Internet, the possibilities
using it for awareness and support, and broad concepts for this, was made in APRC
2014, and is available on Slideshare at this link.)