PROJECT WE FORGOT (PWF)
About the Review
We have been approached by a number of young caregivers who are looking for a specific support structure for their own age group, as they feel that regular support groups of Alzheimer Associations are more focused on senior caregivers.
Project We Forgot (PWF) partnered with Alzheimer’s Disease International (ADI) to survey member associations to:
- Find out the type of services associations currently offer or plan to offer for young caregivers
- Uncover the type of help required by associations in providing services for young caregivers
- Understand the importance associations place on supporting younger caregivers and the interest in starting or expanding services specific to young caregivers
- Gather interest and thoughts on the idea of building a global online platform for the community of younger caregivers.
The Young Caregiver
There is a growing number of young caregivers and family supporters (age 39 and below) globally – individuals who have a family member with dementia as a result of the rise in young-onset cases or those with a grandparent diagnosed with dementia. These young individuals may be giving direct care or supporting a parent giving care to a loved one with dementia.
Millennials as Caregivers
As people live longer and debilitating conditions like Alzheimer’s increase, there is a greater need for caregiving—both family and professional. Sometimes this might be grandchildren caring for a grandparent or young adult children caring for a middle aged parent. Millennial caregivers are not just a trend of the moment, but part of the new way of life in which more and more people need care as they age.
Millennial caregivers may have deferred college, moved back home, and in many ways altered their life paths in order to provide unpaid care to family members who need help with daily activities. Or likewise, they could be raising children, going for night degrees and still embracing their caregiving responsibilities.
Why is it important?
- Young caregivers are balancing multiple roles.
- It is a different demographic with different needs.
- It is an unmet need.
Recommendations by Member Associations
- For young people to understand the condition.
- The use of internet to cut distance.
- Resources & guides for member associations.
The situation they live in is very different than older caregivers may have. Many people feel that they are alone. Youngsters may feel that they cannot start a life of their own because of their parents condition. They might have problems at school or in studies which are caused by the fact that they don’t have enough support or for example the school nurses don’t have enough expertise on memory diseases. Young caregivers should have peer support and official support person that helps with services and difficult situations.
The Alzheimer Society of Finland
There are more than 25,000 people living with younger onset dementia in Australia and many of these individuals have young families. Additionally, dementia may affect grandparents and it is vital that young people are able to understand the disease and how it impacts a person, develop coping strategies and promote awareness of dementia among their peers.
We often see that caregivers, especially the younger generation, don´t really know or dare to tell anyone that they are a caregiver for fear of judgement. People don’t understand and may think they are caring for a “crazy parent/spouse”. There is limited knowledge and understanding around dementia. Young caregivers should have peer support and official support person that helps with services and difficult situations.