Online forum innovation

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COURSE REPORT
“ONLINE
FORUM/COMMUNITY
INNOVATION”
In support of people with dementia and their
carers in United Kingdom”
Instructor:
Peter Svensson
peter.svensson@vinnova.se
By,
Sujith Kumar Anand
suj009@gmail.com
skanand@kth.se
870227-T332

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Table of Contents
1 Introduction....................................................................................................3
1.1 Structure of Project Report.......................................................................4
2 Literature Review............................................................................................5
2.1 Introduction to Talking Point (TP) .............................................................5
2.2 Introduction to Dementia .........................................................................5
2.2.1 People with Dementia.........................................................................6
2.2.2 Carers..................................................................................................7
2.2.3 Health and Social care Professionals...................................................7
3 User Innovations.............................................................................................7
3.1 Constructing in communities of innovation ..............................................7
3.2 Lead Users ................................................................................................8
3.3 Sticky information with Personal knowledge transfer...............................9
4 Proposal of using Open Innovation for Dementia cure .................................10
5 Conclusion ....................................................................................................11
6 References....................................................................................................12
7 Appendix.......................................................................................................14

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1 Introduction
An online forum, or internet forum, or message board is an online website for discussions where
people will have conversations in the shape of posted messages. Forums have specific set of
terminology associated with them; e.g., a single conversation is called as topic or “thread”. A forum
can contain a sub-forum, each of them having several threads. Hence a discussion forms a hierarchical
or tree-like structure[1]. Also, online forum is a type of virtual or online community[2]. Talking point
is a specialized information community; a place where individuals with common interests share and
discuss their experiences.
The rise and advent of Internet has allowed in forming new communities to emerge that exists apart
from geographical locations and allowing all sorts of expression, also come with no geographical
imposes which might limit the community[3]. There are many advantages with online support
communities; members in the online groups have access 24 hours a day, 7 days a week, at times most
suitable to them, asynchronous communication. Asynchronicity allows participants to cautiously
develop replies at their own speed. Geographic along with transportation barriers are absent. People
with mobility issues, hearing and speech problem or care giving responsibilities can participate with
ease[4].
Talking point (TP) is an online support and discussion forum, for people affected by dementia. TP
provides people to ask for advice, share their information, join to discussions and at most feel
supported. Talking point is a non- profit organization managed by Alzheimer’s society and supported
by 11 volunteer hosts and moderators [Refer Appendix]. In TP, help is provided through shared
experience and peer support[5]. Alzheimer’s society and TP central office is located in London,
United Kingdom[6].
The term dementia denotes a syndrome (collection of interconnected symptoms) which includes
predominantly loss of short term memory, i.e., not remembering what happened earlier in the day,
mood changes where people living with dementia feel worried or to get angry about what is
happening to them, and problems with communication and reasoning that includes inability to find the
correct words[7]. The above mentioned symptoms occur when the brain is damaged by certain
diseases such as Alzheimer’s disease or can be the result of damages caused by a series of small
strokes[8][7]. Dementia mainly affects people aged over 65[7] and likelihood for it increases with
age. In most people who are diagnosed with Alzheimer’s disease, the above mentioned symptoms
often appear after the age of 60 years[9]. By 2050, people aged 60 and above will account for 22% of
the entire global population. Furthermore, the occurrence of dementia is predicted to double every
five years.
Figure 1 shows the trend of world population for people aged above 60 years. It is predicted that
nearly 2 billion people will be aged over the 60 years by the year 2050[10][11].

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Figure 1. World Population of people over the age 60 years from 1950-2050
Dementia is progressive, which means the symptoms, i.e., loss of memory, mood changes,
communication problems and reasoning will get gradually worse. Progression of dementia depends
totally on the individual and the type of dementia they experience. Dementia will be experienced by
the individual in their own way, since every individual is unique[7].
Generally people living with dementia require help making decisions in their daily life from carers, be
their family members, friends or relatives[8]. Carers play an important role in the life of an individual
with dementia. Especially during the later stages of dementia, a diagnosed individual will face
problems carrying out routine tasks or develop behavioural disturbances and may become totally
dependent on their care givers[7][12]. When the dependency of the person diagnosed from dementia
on support rises, the level of pressure on the care giver increases. Increasing dependency often results
in developing feelings of anger, grief, loneliness and hatred[13]. This may negatively affect the care
providers health and well-being. Services of social and health care professionals, i.e., general
practitioners, psychiatrists, psychologists, speech and language therapists and educational researchers
are needed for both people with dementia and their carers.
This open and user innovation report investigates the innovation community and personal knowledge
transfer innovation aspects in Talking Point. This report is an attempt to highlight the innovation work
by Talking Point managed by Alzheimer’s Society with and an attempt to suggest all countries to
adopt open and user innovation for advancement of dementia.
1.1 Structure of Project Report
In section 2 provides an overview about the talking point, Alzheimer’s society and about dementia
and people with dementia and their carers. Later in Section3, provides the insights about what
innovations Talking point demonstrate. In section 4, offer a proposal/approach for dementia cure
involving Open Innovation and finally concluding with personal highlights about Talking point.

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2 Literature Review
Several research papers, journals and websites who provide the Innovation and health related
information.
2.1 Introduction to Talking Point (TP)
TP consists of online forum, blogs and groups. TP forum till date comprise with 33,050 members,
with 61,086 threads and 844,524 threads whereas TP blogs, contain 1,226 blogs with 4,218
entries[14].
TP is funded by staff of Santander through yearlong (in 2011) fundraising activities. This is what
Sheralee Morris, Santander’s Community Manager said[15],
“Our staff have excelled themselves this year and exceeded all expectations. Through their
tremendous enthusiasm and efforts we've raised enough money to ensure Alzheimer's online service
'Talking Point' continues to run for three years and been able to extend our support to some of the
vital befriending services the charity runs too. I'm immensely proud that Santander staff have raised
over half a million pounds to support this essential work.”
And Liz Showell, Director of Income Generation at Alzheimer’s Society said[15],
“I would like to say a huge thank you to everyone (Santander) who worked so hard to raise this
money. This generous donation will help us to provide essential support for people with dementia and
the millions of people who care for them.”
A survey conducted by TP in 2012 from their member obtained 630 results with high majority of the
respondents agreeing TP; as a good source of information for dementia, will be recommending to
others and TP has helpful[16].
Alzheimer’s society is a charitable organization providing local support for people with dementia and
their communities in England, Wales and Northern Ireland, Telephone and online services, Research
programme, Training and development services and Campaigning and rising awareness[17].
2.2 Introduction to Dementia
The awareness and understanding of dementia among society is very low, causing barriers to
diagnosis and care, stigmatization, and impacting people involved with dementia. There have been
arguments that dementia should no longer be neglected, instead it must be considered as a part of
public health agenda in all the countries and in the field of HCI[11].
There are an estimated 36.5 million people living with dementia worldwide in 2010 and this number
is projected to nearly double every 20 years, to 65.7 million in 2030 and 115.4 million in 2050.
Wherein, each year the total number of new cases of dementia reported is approximately 7.7 million,
indicating one new case every four seconds[11]. In the UK, it is estimated that there are 800,000
people living with dementia and 670,000 family and friends acting as primary care givers. Current
financial costs for the NHS, local authorities and families on dementia per year is £23 billion and this
cost will grow to £27 billion by 2018[18][19].

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Figure 3. Cost of dementia care compared to national economies.
Data source: World Alzheimer Report 2010
As illustrated in Figure 3, if cost of caring for dementia were compared to the economy of the
country, then it would be the world’s 18th largest economy positioned between Turkey and Indonesia.
The total global cost of dementia is estimated to be US$604 billion in 2010. This cost accounts for 1%
of the world’s gross domestic product[20].
2.2.1 People with Dementia
The overall population of the UK as of 2010 was 62,262,000[21], and currently 800,000 people are
living with dementia condition[18] of which 648,895 people are from England (including Scotland)
whereas Wales with 43,614 and the Northern Ire-land with 18,286 (see Figure 5). By the end of the
year 2021 there might be 1,000,000 people living with dementia condition[22][18]. Dementia is
commonly seen in aged people over 65 years[23].
Figure 5. Breakdown of the population with dementia across the UK,
Data source: Alzheimer’s Society, 2012.
A cure for dementia is yet to be identified as it is a brain related disease where once damaged brain
cells cannot be brought back to life or be replaced. However, epidemiological research provides a
considerable amount of suggestions of modifiable caring factors that can be addressed to prevent or
delay onset of Alzheimer’s disease and dementia[24][25].
Due to the early drug treatments and diagnosis, the progression of dementia is often reduced and this
result in an increase in people diagnosed with early stage dementia[26]. Several studies have revealed

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that older people who have knowledge of the internet (i.e., regularly use websites) use websites as a
valuable source of health information and to find health related advice[27][28].
There is hardly any research is done on people with dementia using websites as an interactive
medium. In order to improve the quality of life and to ease the daily burden, people with dementia
need to interact with websites[29].
2.2.2 Carers
In the UK, 670,000 people act as primary carers to people with dementia, be they family members,
friends or private members due to which £8 billion is saved every year for the state[22][18]. Carers
often find caring for people with dementia is demanding and stressful. Also, they themselves have
lower levels of life satisfaction and high anxiety levels that often lead to depression. This distress is
often the result of having to manage behavioral problems related with dementia and also need to pro-
vide constant supervision[30].
2.2.3 Health and Social care Professionals
Health and social care professionals provide advice and the treatment to people with dementia and
their carers. There are a huge array of different health and social care services relevant to dementia
care, i.e., home care and day care, as well as, services provided by doctors and nurses. There is no
estimation of how many professionals providing support for people with dementia and carers. Social
and health care professionals do not face any widely reported single problem in using websites be-
cause the majority of the professionals use the websites daily as part of their work lives. However, the
information providing support to care recipients through the web-sites is very low due to their work
schedule[31]. Furthermore, little research can be found on social and health care professionals
providing support for care recipients through the websites.
3 User Innovations
User innovation points to innovation by intermediate user; user firms, or consumer users; individual
end users or user communities, rather than by suppliers; producers or manufactures[32]. Hippel.et.al.,
through observation have explained many products and service are developed or at least refined, by
users, at the place of implementation and use[33]
3.1 Constructing in communities of innovation
Communities which support innovation are termed as communities of innovation. In 2007,
Coakes.et.al., termed communities of innovation as a form of communities of practice that are
dedicated for the innovation. They say communities of innovation are made up of motivated
individuals working together a common goal because they are influenced of their common cause[34].
In TP, the online forum is clearly categorized in sections; welcome and hot to use Talking point,
Support from other member; Information and resources, Alzheimer’s society news, notices and
videos, Archive and What’s going on?

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Moreover in the support for other member, it has sub-sections; I have dementia, I have a partner with
dementia, I care for a person with dementia, younger people with dementia and their carers, lesbian
and gay people with dementia and their carers, memory concerns and seeking a diagnosis, recently
diagnosed and early stages of dementia, middle-later stages of dementia, end of life care and after
dementia- dealing with loss.
I study whole forum and came to this understanding, that people with narratively used to connect and
establish an emergent sense of community. The one of the key messages that often reflected in the
forum is, ‘You are not Alone’. The sense that you are alone reflected that many members said they
were isolated from socially and nobody understands what they are going through. Secondly, there
isolation in social grow dramatically after diagnosis, because they forced retire from the work they
enjoyed, and thirdly they discussed the denial they heard from others, mostly from physicians and
their family members[14].
The main feature of constructing community among this group was the idea that others who had been
diagnosed were the idea that other understands better than anyone else what the posters were going
through.
3.2 Lead Users
Lead user is the tern first introduced by Eric Von Hippel in 1986. According to Hippel, lead users face
needs which common in marketplace- but they execute those months or even year before the bulk of
that marketplace encounters[33].
According, to the reality the medical doctors are the lead users for the people with dementia and their
carers. But I would like to add to this, the forum member also lead users. How?
Talking point members provide care and advice to other members. This reduces the tensions and fear
the poster has within him and feels support. This makes poster happy and might increase days of
survival for more period of time than the usual period, i.e.,4.5 years.
During the survey which was conducted by TP in 2012, for the question how talking point has helped
users, here are some of the very good replies.
“I am still nervous about joining in but it is amazing that so many people are going
through the same as me. It makes me feel not so alone.”
“Talking Point has made me cry but it has often made me laugh out loud. All of life
is on here to share.”
“Reading about other people's experiences on Talking Point helped me cope with
my situation, and gave me confidence to ask questions to doctors/carers on
things I was concerned about.”
“Talking Point helped a good deal at my lowest points.”

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“I find TP a huge support and inspiration. Thank you!”
“Talking Point has been the single most important for information and
support throughout my time as a carer for my husband.”
3.3 Sticky information with Personal knowledge transfer.
Eric von Hippel was the first to term Sticky Information, which means the information is costly to
acquire and use in a new location. Also Hippel suggest, that in particular situations that innovation
might be increasingly accomplished by end –users[35].
A simple example of how sticky information being shared in TP, KenC has posted a thread with a
heading Fitness and Dementia[36],
“Fittness and Dementia
Dear All
Today my wife Janice and I went to an event in Newcastle upon Tyne, which was run by a
Government Agency with the view of setting up a fitness scheme for people with mental illness. After
listening to the comments for some time, we decided to explain a few facts to the people who thought
they knew everything about mental illness, which now includes dementia, and there reaction was hard
to believe. As far as they were concerned it was a good idea to get people with the illness to go to
things such as the gym, so that they could remain fit for as longs as possible, which in principal is a
good idea, until you really look into a person with dementia, and I speak from experience. Some time
ago I was told by my GP that it would be good if I could loose a few pounds in weight, and we then
decided that I should be refered to our local gym. The first day was for the induction, which went well
until I came to the tread mill, and after about 4 minutes, I fell off the back, which caused a few laughs.
This happened again, so I moved onto the next item, as the instructor did not see the funny side and
thought that I was fooling around.(This was after the induction, when he had been told that I had
Lewy Body Dementia).The problem being that those of us with the illness know, that trying to
remember things over a certain period can be very hard, especially while trying to concentrate on
doing a task. The next time I went to the gym, I was left to my own devises, and things went from bad
to worse, as I had forgotten all that I had been told on my first visit, and there was no one willing to
go through the induction again, or willing to write it down so that I could follow it. I paid another two
visits and then I realised that my life at the gym was a waste of time and money, as well as the fact
that as a person with dementia, I was a complete liability in a gym. I explained this today, and then I
was asked why I had forgotten everything that I had been told at the induction, so I said that was
because I had dementia, and the instructor had been informed about this in the first place, but there
was no provision for the training course to be written out on a card so that it could be followed at a
later date. I do wonder how many people remember what they did at an induction like that, when you
consider that you use a peice of equipment for so long, at a certain speed, and then move onto
something else doing the same thing, while moving the seats to fit you as you go.
To me it was a nightmare that I chose to walk away from and forget. But to these officials it seemed to
be something else, as if it was all my fault that I had forgotten everything, or done it on purpose.
Surely at an induction, the course should be printed on a card

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which could be carried around and followed by everyone, because like it or not, there are thousands
of us with memory problems.
I live in hope, I think going for a walk is much easier.
Best Wishes
Ken”
To support KenC, Tender Face replies “Just love your style, Ken! (And Janice's!!!)
“I know I've posted before that I despaired with 'health professionals' when mum was in hospital -
'Just press the orange button if you need anything' they'd say to her .... and I had to point out - 'Do
you think she will remember where it is or what it's for?'
I love your idea about walking ....surely getting some exercise out in the fresh air would be good both
physically as well as emotionally for those who are able? Guided 'rambles' might be a far more
economic way of providing 'fitness' opportunities - as well as a lot more pleasure than the worry of
'managing' equipment or ever having the pressure of remembering instructions? Great idea, going on
my list if that's OK .
Love, Karen, x”
And jimsandy reply to KenC,
“Know that going to the gym was a big step for anyone, even myself. As I have a family member with
dementia and would not get her to go or allow her to go. As I would be concerned about her hurting
herself or not remembering why she was there. At the place my mom is at, they get them out to
exercise some, and be involved with other activities. But right now, my mom is having trouble with
her sleeping and medications. So hopefully, you have made some time to go for walks as you
mentioned. As that is healthy too, but cannot always do so, in the bad inclement weather (winter).
Hope you are doing better now with this and have a wonderful weekend.”
Through the above conversation it not only proves that personal knowledge is transferred but also
sticky information as well with no transaction cost.
4 Proposal of using Open Innovation for Dementia cure
In this section, I would like to propose an idea for finding a cure for Dementia using Open and User
Innovation strategies. This is just my personal proposal to prove what I have understood from the
course Open and User Innovation.
Worldwide as of 2010, there are 35.6 million people suffering from dementia. Every year there is 7.7
million new cases are report with the ratio having expected to double every 20 years.
Still governments and research funding organizations are spending billions of money towards closed
traditional innovation approach; Research and Development i.e., intrinsic. The time has come to
change it to extrinsic otherwise population of people with dementia increases and people with
dementia have to leave the soul with pain and de-socialized from family[11].

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Here is my proposal, Government and Research Organizations need to consider Joy’ Law; "No matter
who you are, most of the smartest people work for someone else,”[37] and change from closed
innovation to open innovation.
A toolkit has to be developed for collaborating Scientists; lead user, and Individuals; end user,
throughout the world and be shared through open innovation companies; InnoCentive, NineSigma,
online communities, innovation competitions; Sqore., and so on.
This participation should be unstructured collaborative participation; competition has no time
restrictions, and requirements with multiple staged. There are many example to prove the success of
open innovation in finding a cure for an disease; Jack Andraka inventing cancer test at the age of
15[38] and many more[39].
G8 dementia summit which was held in London, 11th
December 2013 between 8 countries have
concluded in finding a cure or treatment by 2025 like AIDS style[40]. So this will be the stage for
veteran and young open and user innovation specialist to involve for a cause and change the world.
Talking point forum members were invited to talk in the G8 dementia summit and express their
opinions. One of the members who took part in summit have posted in forum and ask other non
invited to share their opinions and asked for any suggestions[41].
5 Conclusion
Talking point is one of the many initiatives from Alzheimer’s society[17] to support people of
dementia and theirs carers through online forum. They alone don’t consider this has innovation. But I
strongly support the online forum has all the potential to create awareness for all the people who are
affected by dementia in all the countries. Talking Point alone has involved in few Innovations;
Innovation Community, Lead Users in caring and support other people and Sticky Information and
Personal Knowledge Transfer Innovation.
The few drawbacks of Talking point are; it is only in English, people need to know English and
people need to have basic skills of working with Personal computer or handheld devices.
Katherine Watt, Manager for Talking point was interviewed to collect some useful insights, vision,
mission and values of Talking Point supported by Alzheimer’s society [Refer Apendix for outline
transcripts].
So I strongly urge governments and all the research organizations that are funding for finding a cure
or treatment to choose open innovation.
I finally conclude and take part with lot of information from this wonderful course. Thanks you Peter.

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[38] “Jack Andraka - 15 Year Old invents Groundbreaking Cancer Test.” [Online].
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[39] “New cures for rare diseases thanks to open and user innovation initiatives | Open Your
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http://forum.alzheimers.org.uk/showthread.php?64341-G-8-Summit-on-Dementia.
7 Appendix
Telephonic Interview was conducted with Katherine Watt, Manager of Talking point
supported my Alzheimer’s society. The highlights of the interview are:
Q-What are your activities as a Talking point manager?
A- Manage the forum, development of new things, look after contents and manage 11
volunteers
Q- Are all the volunteers from UK?
A- UK, US and Canada.
Q- What is the aim of Talking point?
A- Support people with dementia and their carers and raise awareness.
Q- What is the future aim of Talking Point?
A- Grow out, spread the word and continue supporting people with dementia and their carers.
There are some questions where answers were not given due ethical issues.

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