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Editor's e-Note
With Alzheimer’s disease (AD) affecting growing numbers of people, caregivers are often physically and emotionally depleted, but hopefully there is increasing recognition within businesses and organizations of the needs of caregivers for family medical leave, stress reduction, respite, self-care, and overall better understanding and acceptance of the burdens of caregiving for individuals living with AD.

This month’s E-News Exclusive discusses the unique challenges of being a spouse or partner of someone living with AD. Social workers or other professionals who facilitate support groups for survivors can learn from the author’s experience and how he and other survivors may face a second wave of grief.

I welcome your comments at Visit our website at, like our Facebook page, and follow us on Twitter.

— Marianne Mallon, editor
e-News Exclusive
Surviving a Partner’s Alzheimer’s Disease — Losing Twice
By Allan S. Vann, EdD

I lost my wife, Clare, to Alzheimer’s disease (AD) in the spring of 2016 and with 2020 now here I am still struggling to fully move on with the rest of my life. I did not expect to have such a long struggle because I had already felt widowed for several years before Clare died. She was confused all the time, she was increasingly unable to express herself in words, she no longer knew who I was, and we had been living apart. Her mental faculties were gone, and “Clare wasn’t Clare” anymore. I was grieving that loss every day.

But even after Clare’s mind was gone, I could still be with her. I held her hands, hugged her tightly, kissed her, and told her how much I loved her. Usually there was no response, sometimes I received a smile, and on those increasingly rare days when she would say a few words in response, her words were often, “Can you please find my husband?” Clare was “there” with me, yet really “not there” with me at all.

With no cure for AD, once your spouse or partner receives an AD diagnosis, it can become a death sentence. The unanswered question is how much quality time you may still have together. I started observing AD symptoms when Clare was 60 and her AD diagnosis was confirmed a few years later. After her diagnosis, we were only able to enjoy a few more good years together.

A fellow AD spouse, who was also still experiencing similar sadness and loss after the death of her husband, noted that losing someone you love to AD really means having to deal with death twice—first when you lose their mind, and then again when you lose their body.

Full story »
Tech & Tools
Zimmerli Art Museum Offers New Tools for Visitors With Sensory‑Related Disorders

The Zimmerli Art Museum at Rutgers University-New Brunswick is the first art museum in New Jersey to offer specialized tools to help visitors in the autism spectrum enjoy their visit without stressful sensory overload.

The museum is collaborating with KultureCity, a nonprofit that has also worked with MetLife Stadium, to offer the training and materials needed to provide a more positive experience for those with autism, PTSD, or other conditions that may cause sensory overload.

Free sensory-inclusive bags include fidget tools (handheld objects that can be squeezed and manipulated to help focus the user’s sense of touch), cue cards that people with verbal impairments can use to communicate their needs and moods, noise-cancelling headphones, and weighted lap pads to help direct the user’s feeling of their center of gravity.

“A common misperception is that autism is just a behavioral disorder, but it affects processes in our nervous system, which can create a feeling of vertigo or the sense of a lack of gravity,” says Elizabeth Torres, PhD, a Rutgers professor of psychology and director of The New Jersey Autism Center of Excellence at Rutgers-New Brunswick. “Astronauts who return from a long space mission are given weighted suits to bring back their center of gravity until they readjust. In a similar fashion, people with autism can’t always feel their own body weight. For some, the feeling is constant and very disorienting.”

Read more »
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