Keeping Love Alive as Memories Fail

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“Keeping Love Alive as Memories Fail” 

By Gary Chapman, Edward G. Shaw, Deborah Barr. 

I've had family members and loved ones debilitated and die from Alzheimer's Disease. I just read this book and wanted to share a summary of my reading with you in case you find it helpful for your own life and relationships. 

This book is dedicated to portraying the ways that love can persist in relationships even while memory and physical abilities progressively erode. The main premise of the book is that the deep human need for love does not disappear for a person diagnosed with dementia or Alzheimer’s. Part of the reason for this is that the amygdala is not immediately affected by Alzheimers, thus the feeling of love persists even when words or understanding is lost. Gary Chapman is the author of the New York Time’s Best Selling Book, The Five Love Languages, claimed to have saved many relationships by helping people understand the ways they get and give most meaning from the different ways people show love. Chapman, alongside Dr. Shaw’s medical expertise and personal testimony of his wife’s dementia journey and Barr’s experience as a community educator of the Alzheimer’s association, draws on the use of the Five Love Languages for people affected by dementia - both for caregivers and patients themselves. The five love languages provide a non-pharmacologic intervention that can be used by anyone who cares for someone with dementia as tools to sooth unexpressed and unmet emotional needs of caregivers and patients, reducing burnout and abuse from caregivers and behavioral problems in dementia patients. The five love languages are: 

                                  

At the outset, the authors share the definition of Hesed in the Hebrew language, which roughly translates to love + loyalty, or love with intention. The concept of intentional love is particularly important for relationships affected by dementia because it is the only way to ensure reward and satisfaction in relationship continue as the many challenges of dementia progress. 

As brain damage of Alzheimer’s Disease (AD) rapidly develops, patients lose their ability to return expressions and acts of love to family members and people caring for them. Relationships can get very one sided and draining for the caregiving partner. Further, there are seven main threats that make it particularly challenging to maintain the emotional glue of a relationship when one member has a diagnosis of AD. These include delusions of partner infidelity, mistaken identity (not recognizing who the partner is), odd behavior, disinhibition (losing manners and sensitivity of other people’s feeling), repeating (due to memory loss) and shadowing (following the care partner everywhere as they may be the only person the patient feels comfortable around). 

The book highlights the immense burden and stress placed on caregivers, the challenge of not receiving love back from their spouse, and the importance of first ensuring that family members learn how to express their love and appreciation of the caregivers through the love language the caregiver most resonates with. Examples of showing love could include making specific offers to help with chores (acts of service), showing appreciation of the care partners’ efforts through words of affirmation, making the time to listen to the care partner’s concerns (quality time), hugging them more (physical touch) or tangible gifts. 

The five love languages can provide much needed social support for caregivers, helping to prevent abuse and reduce the care partners risk of illness, dementia (caregivers have a 6 fold increase in risk of developing dementia themselves!) and premature death.

For the person affected by AD, emotional life and feelings persist even in the absence of memory (experiment: AD patients watched a sad or happy movie and maintained the feeling of the movie 1 hour later without remembering that they watched a movie). We must therefore avoid causing negative feelings and try to induce positive feelings even in the face of significant personality and behavior changes. In general, someone’s primary love language is likely to be the same throughout their life. For someone in early AD it might be helpful to think about what the person’s love language was before their diagnosis as you attempt to continue communicating love. What specific requests did your love one make? What irritated them? When did they express the most appreciation for your actions? Or feel the most comforted with your words? This will help to know which language to focus on in the early stages of their disease.

As the disease progresses, areas of the brain that regulated that particular language may be damaged. Thus, the love language of a person with Alzheimer’s may change as the disease advances. For example, the damage of the parietal and temporal lobes may make it more difficult to engage in quality time, receive words or affirmation or recognize family members. Thus the question becomes, given the cognition that remains, how can one best communicate love to this person? For example, in late AD even when someone can’t understand language, they can still feel the warmth of your voice; hugs may be too stimulating but tender touch such as stroking their cheek or dancing with them to some music conveys love; quality time might just mean joining them in the activities they are already doing like coloring or picking up sticks; while material gifts may no longer be meaningful, favorite treats or foods are appreciated; and simple acts of kindness might replace acts of service. Caregivers must be prepared for the “moving target” of changing love languages in AD. 

This book definitely helped to convey the importance of intentionally cultivating love in a relationship with someone affected by AD. Even though it might be hard and not very rewarding, expressing love in a way they can understand and appreciate will make a big impact on their lives. It is also extremely important to ensure that caregivers feel love and supported in their role.