Social Support Networks for People with Young Onset Dementia

Background
People with young onset dementia often find themselves in a critical situation in which both the person affected and their next of kin experience major challenges related to daily functioning, mental health, working life, relationships, and future planning. Being a caregiver is demanding, and we wanted to explore how additional resources can be mobilised to provide long term support.
The social support network—that is, family, friends, neighbours, colleagues, and others close to the person—represents significant but often underutilised resources, even though many tend to withdraw.
Project Description
To strengthen municipalities’ ability to systematically help build a broader support structure around relatives and patients, the social support network methodology was developed and tested in selected municipalities in Trøndelag in 2023. It has also become an integral part of the Health Competence Course for people with young onset dementia at Trondhjems Hospital.
The methodology consists of four integrated tools: conversation sheets, social support network mapping, a letter to the network, and a network meeting. The conversation sheets support structured dialogue on practical tasks, legal clarifications, mental health, and social relations. The mapping provides an overview of available resources in the person’s social environment and how these can contribute. The letter helps the person disclose information about the diagnosis in a safe manner. The network meeting gathers key individuals to clarify needs, establish shared understanding, and reduce barriers to participation.
Results
Testing shows that the methodology strengthens municipal practice in three ways. First, the tools create a shared structure for follow up, helping dementia coordinators detect and address needs early. Second, the methodology supports increased mobilisation of the social support network, offering caretakers relief and providing people with young onset dementia greater security. Third, it facilitates improved information flow, more realistic expectation management, and a lower threshold for both practical and emotional support. Testing within the Health Competence Course shows that participants and relatives quickly begin informing and mobilising their own social support networks.
Main Message
The methodology functions as a low threshold tool that can be implemented in municipal memory teams and dementia follow up services. It enables many more people to take an active caregiving role for persons with young onset dementia—early in the course of the disease. The social support network methodology contributes to the development of systematic, knowledge based public health work within dementia care.