Intimacy, Sexuality and Dementia
What does it mean, “We’re sexual from birth to death,” when faced with the growing specter of dementia? Will the nation acknowledge that over five million of its citizens with Alzheimer’s and other dementias have intimacy needs and rights? Will families, friends, professional caregivers, and institutions respect the sexuality needs and rights of individuals who are increasingly unable to care for themselves or respond to others in conventional ways? Will they learn how to connect by listening, touching, hugging, respecting, and loving the person who remains?
1. Dementia is part of today’s reality: if you’re lucky enough to live to be 85, there’s a 50 percent chance you will experience dementia. Now is the time to become an advocate for more research, education, care services, and progressive public policies.
2. Since currently there’s no cure for Alzheimer’s, do your best to prevent or delay it by promoting brain health through regular exercise, a heart-healthy diet, social connections, and brain-stimulating activities.
3. If you’re concerned about someone’s memory, get it checked — first by a primary physician, and then a psycho neurologist. Early diagnosis is key to getting support and planning for a future living with inevitable diminishments. Later, making choices becomes impossible.
4. Read books and view films to understand the experience of dementia. People diagnosed with Early Alzheimer’s have written powerful stories about their feelings and their relationships. Richard Taylor, author of “From the Inside Out” created a powerful DVD challenging the stigma. Many caregivers have revealed their struggles and survival techniques.
5. Stay connected with a person with dementia by meeting them where they are. Learn either the “Best Friends” or the “Validation Therapy” approach that dementia care programs use to help caregivers accept the person’s reality in ways that reduce anxiety and encourage communication.
6. Recognize that dementia profoundly affects partner relationships. A well spouse often experiences decreased attraction after assuming caretaking duties such as bathing and toileting. As the disease progresses, people may no longer recognize their partner or believe they’re someone else.
7. Sexual expression is especially important in a nursing home when physical contact may be a beneficial means of communication, serving to calm and reassure. Ask whether a home you are considering has a sexuality policy that documents residents’ sexual rights, adequate staff training, and abuse prevention strategies.
8. Most caregivers experience loss and grief as they interact with someone who is both there and not there. Unlike a death that is final, this loss continues, often for years, and is difficult and exhausting. You must take care of yourself, which is challenging – but essential — when you who love and care for someone with dementia.
– Peggy Brick, M.Ed., teaches “Alzheimer’s: New Perspectives” at Osher Lifelong Learning Institute, University of Delaware, and is the founder of the Sexuality and Aging Consortium at Widener University.