COGKNOW- Helping people with mild dementia navigate their day

With the increasing number of elderly in Europe in the coming decades the
number of people with disabilitiess will also increase drastically. An increase
is expected from 14% now to 20% in 2020. Dementia is a progressive chronic
disease, from which about 5% of the people older than 65 years suffers and 40%
of the 90-plus. The most prevalent type of dementia in the elderly is
Alzheimer's Disease. It is expected that the number of people with dementia in
Europe will redouble the coming 35 years. Due to this there will be long
waiting lists for sheltered housing projects, homes for the elderly and nursing
homes and other care facilities. The majority of people with dementia will have
to "survive" in their own homes.
The studies carried out until now into the subjective needs of people with
dementia indicate that the most frequently identified unmet needs by persons
with dementia themselves are in the areas of information (on treatment, care
and support, appointments), memory problems, and communication and
psychological distress.
The COGKNOW proposal helps address these societal and indicvidual problems by
investigating how technology can be used to improve the autonomy and the
quality of life of elderly people, so that people with dementia can stay longer
in their own homes with a better quality of life. It is to be expected that
supportive measures that increase the autonomy and quality of life of the
persons with dementia will not only help the patient but will also relieve the
burden for the carer.

The challenging aim of this three-year STREP project is to breakthrough with
research that addresses the needs of those with dementia, particularly those
with mild dementia in Europe. At about 2% of the elderly population, this comes
to around 1,900,000 people. COGKNOW aims to develop technology that supports
people with dementia in their daily life, more specific that helps them to
remember, to maintain social contact, to perform daily life activities and to
enhance their feelings of safety. The core technological objective is to
research and prototype a successful, near-to-market, portable,
remotely-configurable, user-validated cognitive prosthetic device.

We will initially analyse the user needs, state of the art, healthcare models,
technological infrastructures and existing standards in EU member states and
use this information to guide the implementation of COGKNOW. The selection of
tools (wearable systems, interfaces, network and platform, telecommunications
solutions and portable/mobile units) and their integration will be based on
- their proven effectiveness and innovativeness in previous EU, and also
- based on the wish to integrate these services and systems to validate their
use in combination. Thus building on previous European successes.
Implementation will be addressed in two complementary work packages. In the
first instance the development of the cognitive prosthetic device to be used by
the person and the associated home-based services will be addressed. Secondly,
the overarching infrastructure will be developed.
Developments of these two components will provide a cognitive reminder paradigm
which will extend upon previous developments and subsequently enhance the
state-of-the-art. Such a solution will meet the project*s objectives of
enhancing (actual and perceived) autonomy and quality of life of persons with
dementia, especially in the selected aspects of daily living, i.e. remembering,
maintaining social contacts, performing daily life activities and feeling safe.
Evaluation within the project will be supported via the results of three field
tests performed in each year of the project at three differing sites (Ireland,
The Netherlands and Sweden) and will be supported via Human Factor Analysis.

The developed cognitive prosthetic device will be offered in three field tests
(one field test very year), in three test sites to 5 persons with dementia,
thus in total to 45 persons with dementia (3x3x5=45).
Workshops will be designed and carried out with the users (patients and
(in)formal carers) in the different phases of the project to inventory the
needs and wants of the users, and discuss possible qualitative solutions. By
means of the workshops users will collaborate directly in the developmental
process and can make comments on the performance, reliability, usefulness,
safety factors, suitability or desirability of the developed service in each of
the test phases.
All users are involved initially in a short information distribution explaining
the purpose of the project and an informed consent procedure before they are
invited to participate in the project.

The burden for patients and carers associated with participation in the project
(a one hour workshop and two interviews of one hour per patient/carer during a
period of 8 months) is minimal and without risk in our opinion.
The system that will be developed in this project and that will be tested in
the homes of people with dementia on user friendliness, usability and impact on
the autonomy and quality of life aims to support the person with dementia in
his/her daily life, to diminish problems that are a consequence of his/her
disabilities and to improve their quality of life. By supporting them in their
daily life it is expected that they run less risks in daily life than without
the developed system.
However, during the project we will remain sensitive to instances where
additional stresses might be placed on participants and avoid potentially
harmfull events. The risks for this part of the project are for participants
negligible small in our opinion.