Early Diagnosis Dyadic Intervention'(EDDI), an intervention for community-dwelling people with dementia and their caregivers: a pilot study

Autonomy and involvement of people with dementia in making decisions about
appropriate care is very important to ensure the quality of life of people with
dementia (Menne & Whitlatch, 2007). Nevertheless, the care needs of people with
dementia are still unknown, although communicating about the opportunities and
choices and making decisions are often still possible during the initial phase
of the disease process (Clark et al, 2008). Moreover the caregivers do not
always know the preferences of the person with dementia regarding the care they
would like to receive now and in the future. Meanwhile research shows that
people with dementia have strong preferences regarding the care they would like
to receive (Hamann et al, 2011).

Both people with dementia and their caregivers report less health problems and
a higher quality of life when are involved in the care program as a pair (Smits
et al, 2007). There is much evidence that caregivers can develop many
psychological problems. For example, approximately 25 % has a major depression,
but also anxiety disorders are common (Pot, 2007). Moreover, greater
involvement of 'pairs' frequently leads to postponement of admission (Smits et
al, 2007). At the moment, the Netherlands is lacking of evidence-based
preventive interventions in the early stages of dementia which can be given in
pairs, and is also focused on the person with dementia and the caregiver and
the relationship between them.

In this project, a Dutch version of an American 'Early Diagnosis Dyadic
Intervention ' (EDDI) will be developed, assessed and implemented. This
intervention is aimed at increasing the quality of life of the pair,
improvement of affect and self-efficacy and decrease of the stress. The
intervention is designed to improve communication between the person with
dementia and their caregivers by changing their perception about the disease
and its consequences. An important goal is to prepare the pair for the future
that lies ahead of them, especially when the person with dementia is no longer
able to express his or her needs.

Objective of the project is to the American EDDI translate and adapt to the
Dutch situation. Then, in a pilot study there will be examined whether the
intervention is applicable to people with dementia and their caregiver, and if
so, under what conditions they should be offered. It also examined whether the
intervention is feasible for casemanagers. If the intervention is feasible and
there is evidence that the intervention has an impact, an RCT will be
performed.

The pilot study consists of two parts:
1. Translate and adapt the EDDI intervention so it is suitable for the Dutch
situation. After the pilot study, the results are used to further adjust the
intervention.
2. A pilot study to investigate the feasibility and effects of the intervention
(process and effect evaluation).

Questions in the evaluation study:
1. How do participants value the intervention? (process evaluation)
2 Does de intervention fit the needs of the participants? (process evaluation)
3. How do case managers value the intervention? (process evaluation)
4 What is the feasibility of the intervention (process evaluation)
5 Were the case managers equipped to apply the intervenion?
6. What is the impact of the intervention on affect, self-esteem and stress in
people with dementia and on depressive complaints, self-efficay and stress on
their caregivers? (effect evaluation)
7 What is the impact of the intervention on the communication between the
person with dementia and the caregiver?
This pilot study follows a one group pretest-posttest design. A process
evaluation is conducted under casemanagers and participants. Case managers will
fill in an evaluation form each session. Ten participants (combination person
with dementia and his / her caregiver) will be having an interview in which the
experience with the intervention will be discussed.

The main objective of the Dutch intervention is to anticipate future problems.
It is intended that the person with dementia and the caregiver learn to
communicate about the future, their health and how they can ask assistance from
family, friends and professional caregivers. These subjects will be discussed
at an early stage of the dementia, so that the values **and preferences for
both the person with dementia and the caregiver can be taken into account.

The modified version of Early Diagnosis Dyadic Intervention '(EDDI) consists of
four sessions. The intervention consists of psycho-education (focused on the
knowledge of dementia and its effects), communication about the risks (for the
relationship, the caregiver and the person with dementia), communication
between the person with dementia and the caregiver and education aimed at a
positive attitude towards calling in assistance in the future.
The intervention consists of 4 sessions. The first session lasts about 90
minutes, the next three sessions about 60 minutes. The sessions are offered
once every two weeks, but this can be less/more frequent, depening on the
clients's wishes. Each session has a theme:
1. Dementia and communication
2. Values **and preferences regarding care
3. Care for yourself and for each other
4. Help from others
During the sessions, the person with dementia and the caregiver independently
make a short assignment. These assignments will be discussed with eachother and
with the case manager.

In order to follow the adjusted EDDI, a time investment of 1x1,5 hours and 3x1
hour (total 4.5 hours) during 4-8 weeks is required. The interviews will take
up to one hour. Eight couples will get an additional interview to review the
process. This interview will also take up to an hour.

We expect that the intervention will improve the wellbeing of the
participantsand the risk of getting (mental) damage by participating in the
study or the intervention is very small (see risk analysis research protocol, p
18-20).