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Intimacy and dementia: Maintaining a connection with your partner

The need for intimate fulfillment is a continuing human need, with little change in our interest in sex and intimacy as we age. That is no less true for those living with dementia and their caregivers. 

As you adjust to the new reality of being a caregiver, it is important to find ways to remain connected and feel close to your partner that you are both comfortable with as you maintain an intimate relationship. 

The importance of Intimacy

The loss of an intimate relationship is a major part of the grief caregivers feel. 

Intimacy involves the commitment or desire to remain together permanently and the emotional depth and closeness shared by the couple. Intimacy involves shared thinking, information, values and goals within the relationship. But it’s more than that.

It’s the mutual interaction and exchange of energy for the maintenance of the relationship and the shared physical attractiveness, encounters and sexuality within the relationship. 

The change in role from partner to caregiver can naturally lead to fewer sexual feelings. As the disease progresses, the ways you express intimate feelings will change.

Changing behaviors and expectations in relationships that have been nurtured for many years, trigger feelings of guilt, anger, rejection, shame and grief. A person with dementia may have difficulty expressing their sexual needs or may express those needs in socially inappropriate ways.

You can also remain intimate with your partner by holding hands, putting lotion on your loved one, combing and brushing their hair, dancing together, helping feed your loved one, massage or reflexology, hugging or cuddling, touching, sitting side by side, kissing, and saying ‘I love you.’

Gauging Consent

If the desire, willingness and physical ability for both parties is present, couples are encouraged to continue to express their sexuality in ways both partners are comfortable.

No one should be forced or pressured into any intimate activity. Before any sexual encounter, both parties must clearly consent verbally or non-verbally.

Physical arousal is not enough for consent. Before initiating sexual activity, you should feel confident that you can recognize consent as well as signs of distress based on your past experience with your partner.

When in doubt, you should be guided by the nature of your relationship and your partner’s sexual preferences before the onset of dementia.

Consent is as important for the caregiver as it is for the person with dementia. If you do not desire to participate in sexual activities, your partner may not easily understand or accept your decision. Do not argue or rationalize with them. Try to distract them or redirect their attention.

Navigating intimacy and Dementia

If you are still unsure about expressing your needs for intimacy with your partner, attend support groups for spouses of those with dementia, talk with your healthcare professional or someone else who you trust.

The James L. West Center hosts several support groups for spouses and caregivers. Find a complete list here