Tag Archives: relationships with elders

When Dementia Steals Language, A Touch Speaks Volumes

Once a person with dementia loses their language capacity, you need new ways to communicate. I still talk to my mom. But she can seldom answer me. Lately, I’ve been using touch to keep her connected, so I decided to do some research on the effects of massage.

Between the Pond and the Woods

Massages have been part of our family habits for a long time. Years ago, my mom, sister and I decided to stop buying Christmas gifts. Instead we set aside a time when we would go to a day-spa. Each of us got a massage, then we went out to dinner or to a show. The idea was: Have fun together, instead of buying each other stuff we didn’t need. Now, as Mom’s condition has declined, I’ve started massaging her hands or her earlobes gently. I ask her if she likes it and she just laughs, which seems like a good sign.

Although it’s hard to find research, plenty of people think that massage is helpful to people with dementia. The University of Maryland Health Center says, “People with Alzheimer’s disease become frustrated and anxious because they cannot communicate well with language. Using touch, or massage, as nonverbal communication may help. ” They quote a study claiming that people with Alzheimer’s who got hand massages — and were spoken to in a calming manner — had lower pulse rates and didn’t engage in as much inappropriate behavior. The also mention that “health care professionals think that massage may help not only because it is relaxing, but because it provides a form of social interaction.”

The Alzheimer’s Society (in England) says, “There is much anecdotal evidence that massage can help manage symptoms associated with dementia such as anxiety, agitation and depression, but studies have not been sufficiently rigorous to provide solid proof. It does seem likely that massage interventions may well be beneficial, but further research is required.”

Even in the absence of scientific proof, massage seems like the kind of thing that would soothe a body in great distress (heaven knows, it works for me!) I found an article in Massage Today written by Ann Catlin, a Licensed Massage Therapist, that helped me understand why that might be true. Ms. Catlin looks at a person with Alzheimer’s from the perspective of Abraham Maslow’s Hierarchy of Needs. I remember learning Maslow’s Hierarchy in college, but I never thought about my mom’s disease in this light. According to Maslow, all humans have the following needs:

1) Biological and Physiological needs – air, food, drink, shelter, warmth, sleep, etc.; 2) Safety needs – protection from elements, security, order, law, stability, etc.; 3) Love and belongingness needs – friendship, intimacy, affection and love, from different sources; 4) Esteem needs – self-esteem, achievement, mastery, independence, status, dominance, prestige, managerial responsibility, etc.; 5) Cognitive needs – knowledge, meaning, etc.; 6) Aesthetic needs – appreciation and search for beauty, balance, form, etc.; 7) Self-Actualization needs – realizing personal potential, self-fulfillment, seeking personal growth and peak experiences; and 8) Transcendence needs – helping others to achieve self actualization.

Ms. Catlin believes massage has the capacity to meet certain aspects of all these needs. She notes, “Massage therapists can bring a unique perspective to the care of elders living with Alzheimer’s disease by highlighting the role of compassionate human touch in satisfying human needs on all levels.”

Her article offers many more details about how massage can help dementia patients. I appreciate her perspective because it seems to grow from professional wisdom. And regardless of what it does for the patient, giving little massages to my mom meets some part of my own hierarchy of needs. I long to know that she can still sense how much I love her. If a touch can transmit that message, it’s very powerful medicine.

Dementia Informed Families — What do Kids Need to Know?

Kids in dementia-affected families need help understanding the disease, but most educational resources are designed for adults. A touching new website at www.aftdkidsandteens.org is a useful exception created to teach young folks about Frontotemporal Degeneration(FTD), a complex form of dementia.

Between the Pond and the Woods

Although the website was developed by the Association for Frontotemporal Degeneration (AFTD), it could be helpful to young people learning about dementia in general.  Site content is divided into two sections: one part for children aged 4 to 11 — and one part for teenagers. Both include facts about the disease enriched by first-hand testimony from young people dealing with a loved one’s behavioral changes.

Since Frontotemporal Degeneration (FTD) often strikes people who are younger than most Alzheimer’s patients, it’s common for FTD patients to be actively engaged in parenting. When they display disruptive behavior like explosive anger or extreme apathy, it can create real emotional chaos for their children. Any caregiver who has watched a loved one in the throes of a panic attack or delusion knows how such situations can provoke strong emotions — from pity to embarrassment, and even rage. The site offers kids tools that help reduce the traumatic sting of these painful incidents.

One key resource is the site’s compelling trove of written and videotaped reactions from kids who have dealt with the disease. Heartfelt letters remind kids that they are not alone. Hearing the brave, honest stories of other children and teens offers young readers a sense of hope and connectedness. Site content also encourages kids to get involved with a support group — good advice for family members of any age!

To appreciate the power of the AFTD Kids Site, watch the video testimony of a teen who lost her mom to FTD. Olivia G., a 17-year old, talks about how she felt when her mother had uncontrollable outbursts in public. Her video, which also appears on YouTube, will touch viewers of all ages. We know that it’s hard to be calm and understanding in the face of dementia, but Olivia’s words remind us that love and compassion are essential resources for dealing with the disease. She gives us a poignant reminder that we need to react to dementia from a place of deep understanding. Sometimes kids say it better than we can.