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Relationships and Living with Dementia

Mother and daughter looking and smartphone

Dementia symptoms will change and affect relationships in many ways. Relationships and social connections of all kinds can be a key factor in maintaining a sense of self and wellness for a person living with rare or young onset dementia.  

Relationships with family and friends can be a way for people to create shared meaning in the face of the changes that a dementia diagnosis brings. Positive relationships with co-workers or an employer can help to maintain a connection to a persons professional identity for as long as possible.

There are factors relating to dementia diagnoses that can create challenges in relationships. In the primary relationships of family and friends these challenges can include:

  • balancing new roles with one another alongside other demands such as work and/or caring for children
  • ambiguous loss and associated grief for those who are affected by the diagnosis
  • the need to develop new coping strategies and to ask for help as the disease progresses

In relationships with work colleagues and employers challenges can include:

  • communication regarding accommodations to support changing physical or cognitive needs
  • the effects of stigma and misunderstandings

A diagnosis of rare or young onset dementia brings with it a guarantee of change. This often unexpected change can pose challenges to:

  • daily family functioning
  • connection to others and social relationships
  • financial security
  • connection to self

There is an intersection between family functioning and the provision of physical and emotional care to an individual living with dementia. This will be unique to each individual, family, or circle of friends.  

Within the realm of personal relationships as someone comes to terms with a rare or young onset dementia diagnosis, it is usual that support may be needed along the way. We know that support strategies oriented to different transition points along the progression of the disease may be an important factor in helping relationships between people. This might mean increased social, emotional, physical or practical support at key points of change.

Immediately after a diagnosis many people wonder how and when to tell others that they have received a dementia diagnosis. The Young Dementia Network (UK) have prepared a helpful video that highlights the voices of people living with young onset dementia discussing different strategies and approaches to telling others. Family, friends and other people living with dementia can be an important part of post diagnostic support, helping you to take your time, and tell others when you are ready. Planning communications to friends and family can also be done with the help of our direct support team.

Who to tell, how to tell
(Young Dementia Network in UK) 

FAQ

There are both psychological and emotional impacts of a dementia diagnosis. It is usual to experience grief, loss, shock or disbelief, feelings of anger, sadness, fear and even sometimes relief. It is normal to have a wide range of emotions after a diagnosis.  

Acknowledging and accepting emotions can be a first step in safe coping. This can include: 

  • Knowing that there are a wide range of emotions that are normal after a diagnosis, 
  • Setting aside or “burying” your emotions is an unhelpful coping strategy and may make it harder to cope as the disease progresses, 
  • Acceptance of the feelings, thoughts and sensations you are experiencing can help you care for yourself and seek out the social, emotional and practical support that you need.  
  • Acknowledging and accepting emotions is a part of living well with dementia

If you are finding it challenging to acknowledge, understand and accept the thoughts and feelings you are be experiencing you may want to reach out to your health care providers, a trusted friend of family, or to RDS Canada to take part in individual, couple, family or group sessions.

The Alzheimer Society of Canada offers this booklet on common emotions and coping strategies. While they acknowledge that the booklet has been created specifically for people with Alzheimer’s disease it can provide helpful information to people with different types of rare or young onset dementia:

Shared Experiences | Alzheimer Society