Online Life Story Book: A study on its effect for people with early dementia and their caregivers

At present, about 260.000 people with dementia live in the Netherlands. This
number will double over the coming twenty years. Dementia has a high burden for
patients, informal caregivers and society. About two thirds of persons with
dementia is estimated to live at home, but this number will increase given
changes in long-term care. However, living at home with a good quality of life
is not easy to achieve. Dementia is often accompanied by neuropsychiatric
symptoms like apathy, agitation, hallucinations, depression, and anxiety. This
is also related to the quality of life of the patient. Whereas the cognitive
deterioration can hardly be influenced, it is possible to reduce
neuropsychiatric symptoms. A good fit with the personal world of the person
with dementia is an important condition for interventions. Reminiscence
interventions can contribute as the recollection of valuable personal memories
can give feelings of pleasure and trust. Memories are part of the
autobiographical memory system that remains in tact for a relatively long time
in dementia. The Online Life Story Book (OLSB) is an intervention that nicely
ties in with these changes in care for persons with dementia. The current study
therefore wants to assess the effectiveness of this intervention for people
with early dementia and their informal caregivers.

The primary objective of the study is to assess the effectiveness of the
intervention *Online Life Story Book* on the primary outcome neuropsychiatric
symptoms of persons with early dementia, in comparison to care as usual. The
study has four secondary objectives: 1) to study the effectiveness of the
intervention OLSB on the burden and quality of life of the primary informal
caregiver; 2) to provide a first health economic evaluation by analysing the
effects on the quality of life and care consumption of the person with early
dementia; 3) to study the (time to) nursing home admittance as a longer term
effect; 4) to evaluate the experiences of different stakeholders (patients,
informal caregivers, volunteers, and professionals) as well as the use and
complexity of the life story books.

A randomized controlled trial with individual randomization to one of two
conditions is conducted: 1) the intervention condition: participants in the
intervention *Online Life Story Book*; 2) the control condition: participants
receive care as usual.Participants (persons with early dementia and their
primary caregivers) fill out questionnaires at baseline, post-interventions
(three months after baseline) and follow-up (six months after baseline).

The Online Life Story Book is an e-health application that allows to place
personal memories on a dynamic timeline. The timeline is easily marked with
historical years. Memories like life events, anecdotes, photos, movies, voice
fragments, music, recipes, preferences, and activities can be placed on the
timeline. A trained volunteer assists the person with dementia and his or her
informal caregiver in making the Online Life Story Book. The online version can
be printed and both the online and printed version can be used to recollect
personal memories.

The person with dementia and the informal caregiver fill out questionnaires at
three moments in time (baseline, post-intervention, and follow-up) with a total
time investment of 80 minutes for the person with dementia and 130 minutes for
the informal caregiver. Participants are free to collaborate in the study. They
may quit without reason and without consequences for the care they receive.
The volunteer will visit the person with dementia and the informal caregiver
five times for about one hour over the course of eight weeks. The informal
caregiver will spend about one hour after each visit to collect materials that
the volunteer will add to the Online Life Story Book. After the online life
story book has been made the person with dementia and the informal caregiver
are advised to spend one hour a week to recollect personal memories. Volunteers
receive a training in which they gain insight into the personal world of
dementia patients and their caregivers. They are also trained in communication
skills and technical skills. They learn how to deal with negative memories and
with privacy issues and to refer persons to their general practitioner when
complaints worsen.
There are no known negative effects of reminiscence. A possible side effect
might be the recollection of negative memories. Therefore, persons with
traumatic memories are excluded.