For the spousal care partner, romance is often weaken by a combination of tiredness and normal dementia care jobs like helping a loved one dress or get to the toilet. Jobs like cleaning up smell messes definitely don't help, nor do the personality changes that often occur with dementia. Care partners find themselves caught between wanting their loved one to feel like the person they once were and their own growing feelings of distaste towards what used to be pleasant sexual contact.
When the care partner is the loved one's adult child, even custodial touching can feel awkward. While a spouse might be comfortable providing intimate care for their loved one, doing the same for a parent isn't so easy for either person. In this case, the metamorphous into a nurse/patient relationship may be a welcome change that reduces uncomfortable feelings of embarrassment.
For the person living with dementia, the change is more drastic. First, they may still perceive their relationship with their caregiver as the way it used to be, not the patient/nurse one the care partner experiences. However, we have certain social expectations concerning sex, and dementia can erode a person's recognition of these and their importance.
Stan, a man with early dementia wrote: "I find that more crude language comes to mind than ever before. Also, despite being 77 years old, I find myself having a great many sexual thoughts and feelings. Fortunately, these things have only been in my mind. None of this is at all characteristic of my personality. I attribute this to the changes taking place in my brain."
Stan's description of his thought processes is a unique look at evidence of the type of brain changes that eventually lead to inappropriate behaviors. We seldom see the behaviors themselves until the disease had eroded the person's perceived need for restraint. However, thoughts like Stan's are definitely symptoms of the disease. Sadly, this increased sexual interest tends to occur at the same time that care partners are getting more turned off. More sexually aware and needy but with little or no inhibition, the loved one acts out these feelings--anywhere, anytime with anyone.
But it isn't just brain changes. As a person begins to feel less independent, attractive, functional or adequate, they may turn to sex for proof of their value. With appropriateness out the window, sexual advances at any time of the day or any place can be expected. In fact, the advances are most likely when the care partner is most busy, especially if the job doesn't directly include the loved one.
All is not hopeless. Using Responsive Dementia Care, you can deal with these behaviors.
- Awareness: Understanding dementia's effects on your loved one's brain.
- Arrangements: Preparations that prevent unwanted behaviors.
- Avoidance: Avoiding attitudes and actions that increase negative emotions, confusion and unwanted behaviors.
- Attitude: Using acceptance and empathy to see the issue from their viewpoint.
- Action: Acting to give them the emotional support they need.
- Averting: Turning aside the unwanted behavior and using distraction to refocus the loved one's attention to something more acceptable.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.