Who is a Young Caregiver ?
Young caregivers and family supporters are those age 39 and below, caring or helping to look after a member of the family who has Alzheimer’s or a related form of dementia.
There is a growing number of young caregivers and family supporters (Ages 15 – 39) 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.
Although youths and young adults living with a person with dementia have similar experiences to older family members, the impact on their lives is arguably more profound and challenging. Young caregivers are often left to deal with the stigma that the illness carries. They feel isolated because their peers do not understand what they are going through and they carry the guilt when they have to choose between growing up and find their ‘self’ vs. having to shoulder the responsibilities of caring for their loved one. Many young caregivers are just starting their own lives, juggling work, school and social lives, when they are faced with the task of having to take care of a loved one with dementia.
As dementia can impact families with children and young people it is important that we as a community understand the experience of these young people.
Having A Parent with Young-Onset Dementia
Very often, young people are affected when a grandparent develops dementia, but there are many others out there that are living through the challenge of their parent developing younger onset dementia.
When the child is faced with a parent’s diagnosis of young-onset dementia and starts becoming responsible for the parent, it causes a shift in dynamics that can be difficult for both parties to adjust to. Suddenly the child has the responsibility of taking care of someone who until recently was taking care of them, which can put an unusual strain on the relationship.
Also, young-onset dementia is likely to be diagnosed when someone is still working. Many will have significant financial commitments such as a mortgage, children to care for and dependent parents too.
Youths & Young Adults
Youths and young adults make up a large proportion of young caregivers. It is important to differentiate young caregivers in the two categories as their responsibilities, struggles and life stages would differ.
Youths are those between ages 15 and 24 while young adults are those between ages 25 and 39.
of both the Youth & Young Adult Caregiver
Young caregivers may be expected to take on more responsibilities at home and parents might expect their kides to always be there to help. This can bring up angry and resentful feelings and make it hard for them to plan for their own future.
At times, there may be so much to deal with at home that young caregivers don’t have the time or energy for relationships with people outside the family. Some friends might not understand the situation, while others don’t care, or tell might tell the young caregivers that they are bring too negative when they’re just telling the truth about their life. Because of this, young caregivers might pick and choose what they tell their friends and may even drift apart. This can make them feel alone and misunderstood.
Focusing at School
Going through secondary school, college and university can be a challenging and stressful time for anyone but to have to deal with slowly losing a loved one to such an debilitating disease at the same time is unimaginable.
It may be hard to focus during classes as young caregivers might be worrying about the situation at home. They may also be skipping classes and coming up with excuses so that they can stay home to care for their loved one.
Passing up on Opportunities
Many young adult caregivers put their lives on hold, postponing graduate school or marriage. Others pass up job opportunities that would take them away from home. Just as often, they feel pressure to get on with major milestones, to accomplish the big things in life before their stricken parent departs.
Focusing at Work
Young caregivers might be losing sleep when they take on the responsibilities of caring for their loved one at night. Often times, this results in a lost productivity and focus at work. Work in the office might also be interrupted with emergency phone calls from home which can affect scheduled meetings and deadlines.
The Sandwich-Generation Caregiver
Some caregivers might be caught in the sandwich of caring for kids and a loved one with dementia. It is very hard to be constantly flipping between those different roles and often times, a caregiver’s marriage, family, career, and health will be tested.
Supporting Young Caregivers
How Can You Help Support Young Caregivers ?
- Check in with them on a regular basis and let them know that they can talk to you about anything.
- Even if they don’t take you up on your offer, keep reminding them so they know you are being genuine.
- Sometimes young caregivers are protecting themselves by not opening up right away, so don’t take it personally. You never know when they might finally reach out.
- Find out who the young caregivers are in your school and invest some extra time in them.
- It is also important that staff are educated on dementia and the young caregiver’s experience.
- It would help if the school is flexible and accommodative to the needs of the young caregiver by providing extensions if they have been dealing with an emergency or understand when they miss school to help their family.
At the Work Place
- Adopt a caregiver-friendly work environment by extending an open-door policy to help identify which employees are caring for a loved one with dementia at home.
- Extend a more accommodating schedule to help employees manage both their caregiving and work responsibilities.
- Help by hosting formal or informal support groups where co-workers share common experiences, coping mechanisms and strategies for juggling work and caregiving duties.