This study assesses the effectiveness and cost-effectiveness of an internet intervention for family caregivers of people with dementia. In the context of the fast growing number of people with dementia in years to come, there is an urgent need to develop cost-effective approaches that meet the needs of people with dementia and their family caregivers across the course of the illness. Some family caregiver may apply for help in the beginning of the course of the illness, others may use the intervention in a later stage. The potential effect of the internet intervention may act immediately or help people to keep on caring and prevent them from developing (more) health problems.
The RCT-study is conducted in the practical setting of a health provider who is specialized in dementia care and offers case management and a variety of support strategies for persons with dementia and family caregivers. Because internet delivered intervention is highly structured and leaves little room for the therapist to adapt it, in practice the structure remains intact without major adaptation
. Important advantage of such a pragmatic study is that results of the study have a high level of generalizibility.
As is the case with internet therapy (or research studies in this domain) in general
, we expect participants to be more highly educated, with a high proportion of them having a university degree. It is also rather common that clients drop out of (research into) internet therapy. In a recent review on dropout from internet-based treatment for psychological disorders an average rate of 31% was found
. Evidence on any specific variables that may make an individual more likely to drop out is currently limited
. In this study we expect some family caregivers to drop out for specific disease related reasons like admission to an nursing home or death of the person with dementia. All together this may have a negative effect on the generalizability.
Primary outcome measure in the RCT is severity of depressive symptoms of the family caregiver. Anxiety symptoms, feelings of burden and caregiver stress are secondary outcomes. In a review article about consensus on outcome measures for psychosocial intervention research in dementia care, some recommendations are made for use of specific measures
. It is suggested that if depression is the primary intervention target, the CES-D has potential (although it requires further validation across Europe). Also the HADS is mentioned as an useful instrument. With regard to measuring feelings of burden, authors recommend the use of the Zarit Burden Interview (ZBI). This scale has been extensively used in intervention studies, however, only a few studies show significant changes on this scale. In this study we used the Self Perceived Pressure from Informal Care scale (SPPIC) which focuses on the aspect of role overload. To measure caregiver perceived stress we use the Revised Memory and Behavioral Problem Checklist (RMBPC).
In contrast to the CES-D and the HADS, both the SPPIC and RMBPC are not often used in a web-based manner. This means that scale properties like reliability may be influenced. However, research has shown that in the case of two scales measuring depression no statistically significant differences between paper and internet-based administration were found
. It is recommended that format of administration should not be changed when repeated measurements are made. Main advantage of web-based administration
 is completeness and reliability of data (no missing values, no data entry errors). Other advantages are time flexibility for the family caregivers and low costs.
In conclusion, we expect that this study can add important information to the knowledge base on the effectiveness and cost-effectiveness of interventions to reduce psychological symptoms in informal caregivers of dementia persons with dementia. Given the steep rise in the number of people with dementia and the crucial role family caregivers play in caring for them, interventions that reach family caregivers at an early stage are essential