Currently, more than 5 million Americans have Alzheimer’s disease or related dementias (AD). Since aging is the most important risk factor for AD and Americans are living longer and longer, we can expect the number of people affected to continue to grow. About 500,000 Floridians have been diagnosed with AD and the number will increase 44 percent by 2025 unless prevention and cure become available. This disease robs its victims of their productive life, eventually leading to complete dependence on others for their basic needs. Most people with AD are cared for by family members at home and choose nursing home care only as a last resort. In the U.S., spouses are most commonly the family members who provide day-to-day care and they are usually unprepared, overwhelmed and face severe financial challenges.
Among the most challenging symptoms of AD is the loss of ability to express oneself. Spouses report that communication breakdown causes them more distress than any other symptom. Problems such as finding the right word, repeating the same word or question over and over, and substituting one word for another increase in frequency as the disease progresses. Without communication, marriages are threatened and loneliness and isolation replace intimacy. Research is needed to find ways to help families maintain their relationships with a loved one affected by AD.
A recent study of communication in married couples in which one partner was diagnosed with AD was conducted by Christine Williams, Ph.D., professor and director of the Doctorate in Nursing program at Florida Atlantic University’s Christine E. Lynn College of Nursing. The purpose of this study was to discover communication patterns that couples use to maintain engagement with spouses affected by AD and for caregiving spouses to find meaning and satisfaction in their marriages.Fifteen couples over the age of 55 who were living in the community with their spouses and had been married for many years participated in the study. One member of the couple attended a program at the Louis and Anne Green Memory and Wellness Center, which is managed by the College of Nursing at FAU. Couples received 10 sessions of coaching, with caregivers learning to be open to opportunities to communicate, to avoid arguing, correcting, or treating their spouse like a child. Spouses with AD were given time and encouragement to use their communication skills. Conversations between spouses were video-recorded in their homes and later analyzed. Using the general guidelines they learned, caregiving spouses developed patterns of communicating that reflected engagement.
Overall, spouse caregivers were communicating with compassion, patiently reaching out, and trusting in the existence of deep attachment despite the changes they noticed in their spouses. Ten communication patterns were identified including: sharing news about family and friends, taking time to be receptive so that a spouse had the opportunity to communicate, listening without correcting, sharing memories without asking “don’t you remember?,” using words and gestures to communicate affection, telling stories, appreciating moments of clarity, and sharing humor.
To date, most research on communication and AD focuses on communication decline and how caregivers can communicate during tasks such as mealtimes and helping with activities of daily living. These insights are invaluable when the caregiver needs a loved one to follow a command such as “please take your medication.” However, families need more help with how they can maintain their relationships despite declining communication. The patterns identified in this research can help spouses to reach out to partners with AD, thereby encouraging more relationship-focused communication. Nurses and other health professionals can coach caregiving spouses to use these positive communication patterns to reduce frustration and improve marital satisfaction.
