Determining dementia caregivers' needs and preferences for an Internet-based educational and psychosocial intervention

We conducted a needs analysis for a project (funded by the National Institute on Aging) to develop an educational and psychosocial Internet-based intervention for dementia caregivers. The purpose was to determine what information, tools, and resources dementia caregivers need in order to increase their caregiving knowledge and skills. Participants included informal caregivers of a family member with dementia (n=24) and geriatric health professionals (n=11) who work with dementia patients and families. The needs analysis was conducted in 3 parts: 9 caregivers participated in a focus group; 15 caregivers completed a Likert survey; 11 health professionals completed individual interviews. Caregivers were asked about what information on dementia and caregiving they need, what resources and websites they use for support, and what an ideal caregiver website would include. Health professionals commented on caregivers' informational needs and the usefulness of the Internet as a caregiver resource. Results showed that caregivers want as much information as possible, including facts about all dementias (not just Alzheimer's disease), practical advice on caregiving, interactive care planning tools, and access to dementia care resources/services. Caregivers also want detailed information about dealing with caregiving tasks and to be able to connect with experts and peers via message boards or chat. Additionally, health professionals noted that caregivers need information about dealing with their own health and mental health problems. This data is now being used to develop a dementia caregiver website, which aims to improve long- and short-term outcomes for caregivers and their loved ones.