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Couples and Intimate Partners

Mother and daughter looking and smartphone

A person living with a diagnosis of rare or young onset 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 primary care partner is a key factor in maintaining a sense of self and wellbeing. Intimate relationships can provide a connection to shared meaning and a secure and predictable environment.

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

  • Shifts in roles and responsibilities
  • Changes in identity
  • Reduction in self-esteem
  • Altered social connections
  • Shifts in intimacy and changes to sexual activity

In the case of young onset diagnosis, younger people are 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 closest to the person with the diagnosis.

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 or young onset 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 and marital or relationship issues due to changes in communication and behaviour. Having and acknowledging a diagnosis are first steps to creating an environment for intimate relationships to flourish in the face of rare or young onset dementia.

FAQ

For both the person living with a rare or young onset dementia and their romantic or intimate partners sexual need, desires and behaviours may shift and change. The Alzheimer’s Society in the UK has a comprehensive list of questions and answers regarding dementia’s effect on sex and intimacy.

How does dementia affect sex and intimacy?

We recommend reviewing materials which includes information on:

  • Enjoying sex and intimacy after a dementia diagnosis
  • Understanding why a sexual relationship may change
  • How to cope with changes caused by a dementia diagnosis
  • How to talk about dementia and intimacy