Early Onset Dementia: Advice for Couples

Early Onset  Dementia
Advice for Couples

What is Early-Onset Dementia?

• Early-onset dementia (EOD) is a term used for people  who develop dementia under the age of 65  
• In the early-onset group, the most common diagnosis  is Alzheimer’s disease and the second most common is  frontotemporal dementia (FTD)
• These dementias have been known to develop between  ages 30 and 40, but this is uncommon. It is usually an  adult in their 50s who develops an EOD

Younger People with Dementia are more likely to:

• Be employed at the time of diagnosis
• Have dependent children or adolescents
• Be more physically active
• Have heavy financial commitments, such as a  mortgage or children in university
• Have a rarer form of dementia

Issues for Couples Living with EOD  

The changes in intimacy related to the onset of the EOD are  distressing to many couples. EOD may cause an increase in  sexual activity or the opposite may occur and sexual desire  dissipates. Changing roles from spouse to caregiver may impact on emotional intimacy and physical desire.

Try to:

• Find new activities that you both are comfortable with  and can enjoy together.
• Find different ways to experience intimacy
• Consider what you are comfortable with and if you become  uncomfortable redefine the rules and set new boundaries  
• Don’t be afraid to seek professional help (e.g. treating  physician and health care team)

Families with Children

Parents diagnosed with EOD often have young or dependent  children at home. It is important that children understand  EOD, how it affects their family and what changes to expect  in the parent diagnosed with EOD.

• Each child is different and will react in his or her particular way
• Children are often aware of changes to family dynamics even  when they have not been told the facts, so it is reassuring for  them to be given the facts
• Although the truth will be distressing, children may feel relief  knowing that the changes in their parent’s behaviour or  personality is caused by an illness
• Seeing how you respond to the diagnosis helps young people  develop skills necessary to cope with difficult situations, and  manage painful emotions  
• Adapt the information to be age appropriate so that children  understand what is happening, but are not given more  information than they are able to cope with  
• Reassure children that you are still there for them, and that  you understand the difficulties they face. They need to feel  stability amidst difficult changes. 1

Reducing Caregiver Stress:

• Learn about the disease: Lack of information about the  disease can add to caregiver stress. It may be easier for  you to accept changes in your partner’s personality and  behaviour when you recognize that they can be attributed  to neurological changes associated with EOD.
• Be realistic about the disease and your expectations about  yourself: Have reasonable expectations about how much  you can do and about what is important to you. There are  no ‘right’ answers and you may need to try different things  before you and your loved one come to terms with the  diagnosis and how you are both managing.
• Accept your feelings: You may go from feeling at ease to  feeling tremendous anger at your relative or the disease,  to feeling happy to sad, embarrassed, afraid or confused.  Remember, this range of feelings is normal and most  caregivers experience them; do not judge yourself  too harshly.  
• Confide in Others: Discuss the diagnosis with close friends  and family members to allow them insight to the challenges  you face. Sharing your feelings with someone you trust will  allow you a safe place to unburden yourself emotionally.  

1 Alzheimer’s Society, United Kingdom, (2011). “Dementia and children  or young people”. Retrieved from http://www.alzheimers.org.uk/site/ scripts/documents_info.php?documentID=138

Monitor your mood and watch for symptoms of  caregiver stress:

• Denial
• Anger
• Social withdrawal
• Sleeplessness
• Irritability
• Health problems
• Thoughts that life is not worth living  (Seek help immediately)

If you have any of these symptoms for more than a  couple of weeks speak to your doctor.

Helpful websites

Alzheimer’s Society of Canada  

Updates on research, treatment, tips on providing  care, information on programs and service s at the  local chapters.

https://www.alzheimer.ca

The Association for Frontotemporal Dementias This is a place for families to turn for accurate  information and support related to frontotemporal  degeneration.

www.aftd.org