Personalized Care enabled by activity monitoring

A quarter of the Dutch population will be over 65 years old in 2030. It is
estimated that of this group, 10-15% are frail elderly (430,000 to 645,000).
The number of dementia patients in the Netherlands will increase from 175,000
in 2005 to about 320,000 in 2030 (Ministry VWS, 2005).
Frailty is defined as the decrease in reserve of multiple organ systems,
relatively small changes in internal or external environment can have major
consequences for an elder to maintain an acceptable level of physical, social
and psychological functioning. Frailty can be initiated by illness, inactivity,
inadequate food intake and / or the physiological changes of aging (Ahmed,
Mandel & Fain, 2007, Steverink, 2001). Dementia is a collective name for
congenital disorders characterized by combinations of multiple disturbances in
cognitive functions, mood and behavior.
This increase in the number of frail and demented elderly will increase the
need for long-term care, which needs to be absorbed by both the formal and
informal caregivers. The healthcare organizations are under pressure because of
the growing scarcity of formal caregivers. In addition, the number of informal
caregivers is decreasing.
The government encourages that this group of people stays at home independently
for as long as possible, if they wish so (eg, care package "Full Package
Home"). In addition, many older people prefer to live in their own home than to
move to a care or nursing home.
However, there is a fear about the safety of the environment in the home, for
example, waiting a long time before some one notices the elderly (eg. after a
fall or stroke). To reduce these feelings of insecurity, technology could aid.
Various domotica projects in the Netherlands have shown that the realisation of
security by, for example by an active or passive alarm system, the elderly are
able to remain living independent in their own homes (Van der Leeuw, 2004,
kenniscentrumwonenenzorg.nl, 2008).

This research protocol focuses on the Quiet Care system. The system was
developed by Dr. Anthony Glass Cock (Gerontoloog and Professor of Anthropology)
and Dr. David Kutzik (Gerontoloog Assistant Professor of Sociology). The idea
for the system arose during an interview. The interviewee answered the question
whether he ever cared for an elderly or helped one: "Yes, every morning after
getting up I look out my window to see if ther is smoke coming from the chimney
of my father If smoke comes out, I know that he up and that he is making tea.
If there is no smoke coming from the chimney then there is probably something
wrong and I go to my father to check on him. "(Hutlock, 2004). Based on this
information, Dr. Glass and Dr. Cock Kutzik developed an idea to develop a
system, with which they can monitor the activities, from a distance, and infer
how the elderly is behaving in his home. The development of this idea has
resulted in the QuietCare system. The system through the infrared sensors ADL
activities of an elderly in his own house. The underlying idea is that not
being able to perform these activities puts independent living at risk.
Current methods for identifying problems consist of combinations of
observations and questionnaires on the activities in the house. These have
repeatedly declined and the decline of questionnaires is subject to recall bias
(especially in the elderly group in which cognitive problems). However, the
QuietCare system automatically records the behavior of the elder in the home
and does not run the risk of recall bias. Thus, an insight into how the elder
behaves in its own house (Glass & Kutzik Cock, 2006).
In addition to capturing the activities of the ADL elder, the system generates
an alarm if an unsafe situation arises. The QuietCare systeem learns the
average activity pattern of the person. If there are large deviations in this
pattern are detected, a notification is generated so a caregiver can take
action (Glass & Kutzik Cock, 2006). On page 11-13 in the protocol, the
technical aspects of the QuietCare system extensively described.

The development of the QuietCare system ranged from the idea to the development
of the system in the laboratory and initial testing, followed by a field test
(for the reliability and validity of the system) and a pilot study (the effects
of the system on the client and the caregiver). After development of the system
in the laboratory, the system was installed in an ADL suite along with a video
camera to record activities. During this test phase was systematically tried
how many sensors are needed and how they should be placed. At the beginning of
the trial, all rooms, cupboard and drawers were monitored. This led to an
abundance of information. Systematically sensors were removed to determine the
activities that are informative for caregiving. This resulted in a basic set of
five sensors that can be expanded if desired. The placement of the sensors is
determined by experimenting on how best the information collected (Glass Cock &
Kutzik, Unpublished). After this initial test was a field test (12 months) to
test the reliability and validity of the system tests (Glass & Kutzik Cock,
2006). The reliability of the system was set at 99%. The validity of the system
was set at 97%. Following these results was a pilot in the USA to ensure the
effectiveness of the system designed to evaluate (Glass & Kutzik Cock, 2006).
There were a total of 26 clients participating in the pilot. The clients had
various diseases including heart failure, pulmonary emphysema, HIV, Parkinson's
disease, Alzheimer's, diabetes and cancer. During this pilot, the participating
providers used in more than 100 cases the information from the QuietCare system
to alter the care for the clients. The caregivers indicated that they
experienced it to be pleasant to discuss specific issues with clients. The
participating customers indicated that they felt safer at home because someone
was keeping an eye on them. Currently the system operates in more than 2,500
people in the United States and more than 300 people in Great Britain.

This evaluation research will focus on six elements (1) the technical
evaluation of the system (2) the validity and reliability of the system, (3)
the succession of the protocol, (4) the effects of the Quiet Care System for
the client, the informal caregivers and the formal caregivers, (5) the costs
for the implementation and use of the system and (6) the influence on the
health care organizations.

This evaluation study has a longitudinal design in which each participant
(client, informale and formal caregiver) are included for a period of six
months. Measurements are carried out through interviews. It is a
quasi-experimental design with pre and post measurements.

Time of measurement
At the start of the study (T0), after 3 months (T1) and at the end of the study
(T2) clients, informal and formal cargegivers are interviewed. The following
questionnaire will be used in the interviews:

Client: GARS, loniness, EQ-5D, feelings of safety and care usage.
Informal caregivers: Objective Burden Informal Caregivers, Self-Rated Burden
and the Caregiver Strain Index.
Formal caregivers: Job satisfaction questionnaire. Are also monthly meetings
for them with the objective to identify bottlenecks and resolve.

QuietCare system, activity monitoring

There are no risks for the client, informal and formal caregiver by using the
QuietCare system.

Estimated burden of interviewing clients: once 90 minutes and 2 times 60
minutes (210 minutes total).

Estimated burden of interviewing the informal caregiver: 3 times 40 minutes
(120 minutes total)

Estimated burden of interviewing formal caregivers and monthly meetings: 3
times 15 minutes and the monthly meetings are estimated at 6 x 60 minutes (405
minutes total)

To establish the rate of false negative alerts; all participants are called 3
times during the 6 month period about possible incidents (that did not generate
an alert).