How to engage someone with dementia or Alzheimer’s
There are a few staples in my wardrobe that I’ve hung onto, despite the pounds from baby and nursing, that I may never slip into again. They bring a smile to my face when I scan the closet. Strikingly feminine and fun, one is a mauve Western-style, button-front shirt with burgundy snaps and trim. The other, a white cotton top with lace detail, scalloped cuffs and blue embroidery, one might wear on a Mexican beach holiday. I always received compliments when I wore them and was occasionally stopped by strangers asking who the designer was. I’m proud to say she was my sister-in-law, Anna.
The breadwinner and star of the family, Anna and her husband were movers and shakers in Los Angeles, he the intellectual writer and journalist, she starting her own fashion label, winning awards and contracts with chic boutiques and department stores around North America. She later went on to design for other labels; her pieces often were bestsellers.
We started noticing some memory issues when Anna was in her early 50s. She reversed a.m. and p.m. for flight departures more than once. While planning her mother’s 80th birthday party, she repeated tasks I’d already completed, like booking the venue. When I was flying in for a visit, she’d forget the plans we’d made together.
At the time, the individual incidents were perplexing for someone with such business acumen, but Anna’s effervescent and bright spirit steered us from concern.
She is now three years into a young-onset Alzheimer’s diagnosis, but the disease is no longer young in her. It has rocked our worlds and become a difficult test for her husband and 16-year-old son.
Anyone who has played the role of caregiver knows the demands are debilitating. Living in another time zone has made me and my husband, Anna’s brother, feel helpless. We research the disease online and try to set up appointments from afar. Still, boots on the ground are really what this family needs, so we often host Anna here or fly out to see her and her family. Each visit presents a new set of circumstances dictated by Anna’s decline. There is not a day that goes by that we aren’t educating ourselves on how to keep her engaged.
Socializing with someone with Alzheimer’s and other forms of dementia requires a specific skillset. Our learning curve was softened by the expert advice and writings of local Alzheimer’s and dementia specialist Jytte Lokvig.
We attended Lokvig’s Rethinking Dementia seminar in Santa Fe last month. Professional and family caregivers came together for a series of lectures, hands-on art projects and a virtual-reality experience simulating what it can feel like to have dementia. The takeaways were numerous. They included working with collage and clay, challenging our perceptions of the abilities of those with dementia. Lokvig has showed that being immersed in an art project allows a person with dementia to collect thoughts; the activity promotes speech. I also learned that words matter. I choose my language with Anna more carefully now, using phrases like, “May I lend a hand/ join you?” rather than, “May I help you/do that for you?”
The most important reminder from Lokvig was that “everyone is still a person in there. There are ways to ease the journey” and to live well with Alzheimer’s. Anna’s light may be flickering, but it is still bright and recognizable.
While there is no one-size-fits-all guide, here are some tips on how to conduct yourself and thoughtfully engage a person living with dementia or Alzheimer’s.
◆ “The words we use affect our feelings toward our situations and the people we care for. If we talk and think of caregiving as a burden, it most certainly will be. When we call a person an ‘empty shell,’ we’ll think of her and treat her as such, and she’ll likely withdraw into herself and prove us correct,” said Lokvig. The “long goodbye” is a cold and cruel term, suggesting the person starts dying as soon as they are diagnosed.
◆ When it comes to challenging behaviors and circumstances, the problem is often with the caregiver and a lack of compassionate communication.
◆ Those living with dementia are hyperaware of other people’s emotions, so be mindful of the mood and energy you bring into a room. Before and during a visit, take deep breaths to remain calm.
◆ Do things with the person and not for them. “Some memory-impaired people are sick and tired of being cared for,” said Lokvig.
◆ Face your friend when you speak with her, and talk at eye level.
◆ Make her feel safe and comfortable by connecting with her. Get rid of unnecessary noise, such as a TV.
◆ Recognize when it’s enough to simply be in the presence of one another and not fill the time with chatter and activities. “We think that we’re soothing them by talking, but that’s not always true. I learned to shut up,” said Lokvig.
◆ There is dignity in taking a risk by permitting your relative to make some decisions for themselves.
◆ When helping with tasks seems daunting, it may be helpful to break them down into smaller steps. Start with, “Pick up the toothbrush” rather than, “Brush your teeth.”
◆ Rather than asking direct questions, present options. Limit them to two and add some visual cues — for instance, hold up two shirts to choose from. When ordering from a menu, share an observation about something you know your loved one would like: “The salmon looks delicious tonight. Does that sound good to you?”
◆ Instead of saying, “Remember when,” try starting a conversation with, “I was thinking of the time we went fishing at the lake.”
◆ Prep youth and children to have a successful visit by encouraging them to slow down physically and verbally, annunciate and speak face to face. Explain to a kid they should not try to prove a point or point out faults — that in the mind of their loved one, what the person believes is true.
◆ Understand aggression as an expression of your friend’s struggle to communicate. Effacia, the loss of language, is terribly frustrating. Try to get to the root of the problem.
◆ Touch can be startling or aggravating. Ask, “May I give you a hug?” and be gentle with affection, guided by your friend’s cues.
◆ Kindness, respect and the Golden Rule are particularly important to those who are vulnerable. Even a person with advanced dementia recognizes tone of voice, condescension and disrespect.
◆ Talk about a diagnosis with your friends and family. Dementia and Alzheimer’s are chronic illnesses like diabetes. Sharing your news leads to a well of support and wisdom.
A couple of week’s ago, we shared quality time with Anna — promenading at the beach, sipping berry mojitos and going for sunset drives. Her recognizable laugh bellowed out throughout our stay when words failed her.
She was still in there, wearing her heart on her sleeve, and a stylish sleeve she designed.