February is a month known for chocolate hearts and roses. In the world of dementia care and relationships, questions such as, “can someone with dementia still have a need for affection?” or “what changes can I expect from my loved one who has been diagnosed with dementia?” and “how can we ‘keep the love alive’ despite the diagnosis of dementia?” can sometimes come up.
We want to start off by stating, there is no shame nor judgment when asking these questions.
Every relationship is unique, and having a partner receive a diagnosis of dementia doesn’t mean the end of love or affection in their relationship. For some couples it could mean no changes in their relationship for many years. For other couples, it may result in having to adapt to sudden or slow changes in the relationship, depending on the type of dementia.
‘Adapting’ is the key word. It’s not always easy to adapt to changes, but there are things that a couple can do to maintain their close bond. Working and witnessing the changes of many couples over the past 20+ years working as a Dementia Consultant, I have noted many creative ways couples have tried to keep their loving relationship alive. Here are just 3 helpful reminders I’d like to share:
As human beings we all need affection
Abraham Maslow, an American psychologist, known for “Maslow’s Hierarchy of Needs,” ranked the need for ‘love and affection’ second only to physiological needs. This means that as human beings, we all need love and affection, to survive and thrive.
It is important to note that a person living with symptoms of dementia doesn’t suddenly stop wanting or expressing affection. Even someone with later stages of dementia still can feel or recognize expressions of love and can enjoy caring affection. Consider ways to creatively adapt to how a couple give, express and receive affection from each other. Perhaps it’s by giving and receiving more hugs or holding hands or a back or arm rub while watching a movie together.
As dementia symptoms change, a partner may need to learn ways to adapt to the person’s new comfort level while being supportive and respectful. Perhaps it may be giving a mushy Valentine’s Day card or plush animal or having a dance together. Remember, just because the person with dementia did not enjoy these activities in the past, does not mean they may not have found a new appreciation for these gifts and activities now that they have dementia. It is possible that in certain cases, a person’s dementia may have made them more thoughtful, expressive and affectionate and therefore, may now be open to receiving the same from their partner.
For some people, however, should their partner with dementia no longer be able to provide their level of companionship and/or physical intimacy, they may want to seek this affection with someone else. If so, understanding, and non-judgments from family and friends will be needed as they work through their feelings. If needed, seek the help of a professional to help navigate through the mixture of emotions that may come as a result of these changes in the family dynamic.
Importance of talking things out
Adapting to change is not always easy. Talking about love, affection, intimacy and even sexuality is also a difficult topic for some couples to do whether privately or together as a couple. However, talking things out, especially in the earlier stages may reduce any awkward tension and improve the relationship for the present and the future. This requires partners to have honest and respectful conversations and really listen to each other. These deeply personal and vulnerable conversations can help uncover a more meaningful layer in the relationship.
Reaching out to trusted friends/family or a trained professional on the subject matter, may help one or both partners to obtain insights and ideas on ways to help address some of their concerns, or challenges that are being experienced in the relationship.
Keeping the love alive by living in the present
Some couples can become hyper focused on dementia and its implications, specifically, their “fears” of the future. This causes them to stop living in the present and prevents them from enjoying each other as a couple.
Accepting the way things are now, in the present time, rather than reflecting on the past and how things used to be, may help a couple to cope better with the changes in their current relationship. Keeping the love alive may require a shift in thinking, to help maintain a loving bond as a couple today.
As well, finding time to continue doing activities together that are or were enjoyed as a couple may keep the fun alive. As things slowly change over time, perhaps new activities can be tried together focusing on the strengths and abilities of both partners.
As a Dementia Consultant, I am inspired by real stories of hope from couples and families who found a deepening in their relationships, not despite dementia, but because of dementia. However, I also want to be realistic. There have been circumstances when the changes were too much for one partner to handle. Again, it is important to eliminate judgment as sometimes caring for someone living with symptoms of dementia, particularly for the primary caregivers, can be overwhelming and for some, even lonely.
The good news is there is help and plenty of judgment free, safe-space support available where family caregivers can get advice from peers and experts who can relate to what they are going through.
For the most part, a love life does not end with a diagnosis of dementia. For many of my family clients, this is merely a milestone in their lives that offer opportunities to uncover new strengths, wisdom, purpose, and a more profound meaning of love.
Karen Tyrell CPCA, CDCP is a Dementia Consultant, Educator, Author & Advocate, and Founder of Personalized Dementia Solutions Inc. (www.DementiaSolutions.ca). Karen offers her expertise on dementia care through speaking engagements, workshops, support groups and by working one-on-one with families and caregivers to provide emotional support and practical solutions. She was also on the design team for The Village Langley and provides ongoing education to the Village team, families and the community.
The contents of this blog are provided for information purposes only. They are not intended to replace clinical diagnosis or medical advice from a health professional.