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There can be significant changes to family relationships after a diagnosis of rare or young onset dementia. The challenging part of these changes is that they often happen slowly, over a longer period and may sometimes be hard to identify or name. Changes may be related to shifts in roles and responsibilities within a family and experiences that are “out of sync” with what is perceived to be the expected or the “normal” trajectory of a life course. Additionally, there are often feelings of loss and sadness that are not always understood by others outside of the family. These feelings can be hard to talk about within the family. These are important topics to explore as being able to name and identify challenging experiences can be important and may help in processing thoughts and feelings. Identifying and understanding the changes in a family can be an important factor in asking for help from others.

There are many different roles that can be affected depending on the age at which a person is diagnosed with rare or young onset dementia. For example, an individual may receive a diagnosis at an age or stage in life when they are employed, raising a family and have significant financial commitments. A person who receives a diagnosis of rare or young onset dementia may be parenting young children, teenagers or young adults. At each of these different stages' children will have different needs and experience changes with the affected parent in different ways. More specifically, adolescents and young adults are at life stages where they are seeking individuality and autonomy from their families, these are stages where romantic relationships are formed, and life goals are pursued. A diagnosis of rare or young onset dementia in a parent may interrupt some of these experiences in the life stage of teenagers and young adults who may take on roles that seem in conflict with their age and stage. Young children, adolescents and young adults may also hold concern for the well-being of the non-affected parent.

Changes in the family may include:

  • Loss of a parent as a caregiver to children
  • Changes in roles in the family
  • Communication changes impacting relationships and how decisions are made
  • The affected person not being able to grandparent as anticipated
  • Adolescent and young adult children experiencing feelings of a “life on hold”, embarrassment, anger, sadness
  • Feelings of isolation or feeling unsure about how to talk to one another about changes

What families may need: 

  • Connection to others who understand, who have shared experiences 
  • Support groups tailored to age or role within the family 
  • Coping strategies to manage difficult feelings and experiences 
  • Time and space to make memories together 
  • Consideration of the whole family experience 

Each individual person in the family may process their experience and navigate changes to relationship and roles in different ways. It can be important to understand and recognize the impact that loss, and grief, may have on the family system.


After a diagnosis of rare or young onset dementia there are many different types of losses that can evoke feelings of sadness and the process of grief. These experiences may be better understood by knowing some of the different types of grief we can experience. For example: ambiguous loss, pre death grief, anticipatory grief and disenfranchised grief.

The long-term nature of rare or young onset dementia requires renegotiating of family boundaries, roles and expectations. These changes can be challenging as individuals begin to take on roles that they may not have expected or that bring up challenging feelings. Managing this type of transition in roles may require:

  • Acknowledgement and acceptance of your feelings around the change
  • Sharing your experience with family, friends, or people with shared common experiences
  • Developing safe coping strategies for when thoughts or feelings arise and are difficult

With these changing roles comes the need to build safe coping strategies that you may not have used before. You may want to build these skills with the help of your health care practitioners, a therapist in your local area, or through the support services of RDS Canada, you may reach out at any time to discuss challenges and our direct support team can help you connect to what you need.