Families

There can be significant changes to family relationships after a diagnosis of rare 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 topics to explore, as being able to name and identify challenging experiences can be important, and may help in processing thoughts and feelings. Asking for help to identify and understand the changes in a family may be part of your support plan. 

There are many different roles that can be affected depending on the age at which a person is diagnosed. 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 may be parenting young children, teenagers or young adults. At each of these different stages, children will have varied 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. A diagnosis of rare dementia in a parent may interrupt some of these experiences when teenagers and young adults 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.