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Couples or Intimate Partners

Mother and daughter looking and smartphone

A person living with a diagnosis of rare dementia will need assistance from others as the disease progresses. Most often this comes from the people that are closest at the time of diagnosis. Often this is an intimate partner, husband, wife, lover, partner. The relationship between a person living with a rare dementia and their partner is a key factor in maintaining a sense of self and well-being. Intimate relationships can provide a connection to shared meaning and a secure and predictable environment.

There are multiple reasons why a diagnosis of rare dementia may pose challenges to couples and intimate partners. A dementia diagnosis will inevitably result in:

  • shifts in roles and responsibilities
  • changes in identity
  • changes in self-esteem
  • altered social connections
  • shifts in intimacy and changes to sexual activity

Given rare dementia is normally diagnosed at a younger age, the affected person is more likely to: 

  • have significant financial responsibility
  • be in paid employment
  • be caring for children
  • be physically fit and healthy at time of onset

All these factors have the potential to impact the relationships. In addition, the time frame between symptom onset and diagnosis may also be a factor that influences relationships. The average time between symptom onset and diagnosis for a rare dementia is longer than memory-led dementia in older age.  Because of this, couples and intimate partners are often exploring alternative explanations for behavioural changes or relationship issues that may be due to dementia-related changes in communication and behaviour. Acknowledging a diagnosis is a first step to creating an environment for intimate relationships to flourish in the face of rare dementia. 

The RDS Canada support team provides tailored support to couples and some of our monthly groups are appropriate for couples to attend together. If you are interested in taking part in support with your partner or spouse, please contact the RDS Canada support team.