This week, I wanted to start the conversation about an issue that is a common concern for couples when one person has cognitive decline: changes in intimacy and particularly physical intimacy. This topic is sometimes difficult for the couple to bring up to providers, and providers may not think to ask about it.
I asked our colleague Dr. Glenn Smith, who has significant expertise in this area, for some time to talk about this issue. Below is our exchange. I hope that if you have any questions about intimacy issues, you will feel empowered to talk to others (including your provider) about it. I also hope you find some suggestions that might help you in our discussion below. Please feel free to comment here as well if you have experience with intimacy/relationship changes in your journey with MCI and ways you may have handled this with your partner.
Dr. Dona Locke (DL): Dr. Smith, thanks so much for your time—intimacy can be a difficult topic to discuss in many areas, and for those with memory problems it is no different. What are the most common intimacy issues you see with the couples you work with in the HABIT program?
Dr. Glenn Smith (GS): As you know, in HABIT we refer to the person with MCI as the participant and the person supporting them in the program as their partner. Partners in the program are most often spouses as opposed to adult children or other types of partners. It is challenging for couples in the HABIT program to raise issues of intimacy they may be experiencing. Often they seem to feel that there are more ‘pressing’ issues. However, I think a key pressing issue encountered in the program is closely linked to intimacy issues. In HABIT, we often confront the role changes that are starting to surface because of the MCI. Many partners do not yet see themselves as caregivers, but they are increasingly aware they are taking on what might be seen (by themselves and others) as supervisory roles. The mutuality of the typical romantic relationship is shifting. More than one partner has said some version of “the more I feel like I am parenting the participant, the more I struggle with our intimacy.” Yet MCI is a condition where both the participant and the partner really need ‘validation.’ They need the reassurance that in spite of the cognitive and role changes they are still okay and still connected. And the intimate connection we associate with sex often serves as a strong form of this validation.
DL: I imagine that, to some extent, it can be helpful for the couple to discuss how MCI impacts some of the dynamics in their relationship openly with a therapist. Beyond that open communication, are there specific examples of recommendations you make for couples with intimacy concerns?
GS: In HABIT we are working with couples to find new HABITS to maintain a quality of life in spite of MCI. This philosophy can extend to how they couple connects in their relationship. I think it starts with overt expressions of appreciation and gratitude for how hard each person is working to address the MCI. Increasing verbal communications of reassurance and love can go a long way towards the validation I mentioned above. And then consciously increasing touch through handholding, hugging, and sitting close. Then strengthen these behaviors into habits.
DL: Do you have suggestions for providers like me working in this area for how to query their patients about concerns in this area?
GS: Providers should actively explore role changes with couples confronting MCI. Often just discussing a partner’s frustration with having to take over activities the participant once completed is a gateway to discussing the undeniable loss that there is in MCI. For the participants there is a sense of a loss of wholeness and independence, for the partners a sense of loss of the equal partner. These explorations of loss often segue to discussions of changes in intimacy.
DL: For patients, is there a certain type of provider with whom you’d recommend they raise concerns about intimacy?
GS: I think one of the best places for partners to raise such issues is not so much with healthcare providers per se but in partner support groups. Sharing and normalizing these challenges with others on the same journey can be very helpful.
DL: I really love that suggestion--what a good idea! So often we hear from our patients and partners that "It is just so good to know I'm not alone." I imagine this topic is no different in that respect. And again, some of the most well received suggestions are those our patients and partners receive from each other. That said, are there any intimacy related changes that might indicate a new medical issue or neurologic problem such that you’d recommend the couple mention to their medical provider for further evaluation?
GS: There are two key issues I would flag that might require medical awareness and attention. The first and relatively infrequent situation is when the participant becomes ‘hypersexual”, or persistently interested in sex, and may be making advances that seem inappropriate both in terms of time and target. This can be an indication of disinhibition resulting from changes happening to areas of the brain involved in the judgement and impulse control. Providers may wish to evaluate further for a brain basis for these changes and work with you on managing such behaviors. The second and more common change would be when a participant or partner shows an uncharacteristic loss of libido. This may be a symptom of a lack of initiation and interest in general that comes with certain neurodegenerative conditions. In the context of sleep and appetite changes, as well as increased sadness or irritability, intimacy changes may be another symptom of clinically significant depression, that might be highly treatable.
DL: Dr. Smith--thank you so much for you time! To our readers either living with MCI or partners of those living with MCI, we'd love to hear your feedback on this topic, and any suggestions YOU have for maintaining valued intimacy and connection even when memory change is present.