Nancy Hendley
Dementia Care Trainer

Family Caregiver Workshop: A Tool of Support

It has been well established that Alzheimer’s disease and other dementias affect not only the person with the diagnosis but also the friends and family of that person. Spouses, children, adult children, and friends struggle to comprehend the changes brought on by the disease process. The challenges that we face as care partners are numerous and confusing. Exactly what is dementia? How will the disease progress? What kind of help is available for the person with dementia? Is there help for me? What will the future hold? These questions alone can be frightening and overwhelming.

Fortunately, CaringKind has been assisting family members to answer these questions for over thirty-five years. The Family Caregiver Workshop offers family and care partners practical tips and tools to navigate the challenging world of dementia care. The ten-hour workshop consists of four two-and-a-half-hour modules that meet one day or one evening per week for four consecutive weeks. Currently, the workshop is offered in English, Spanish and Chinese. Each module has a specific themes Understanding Dementia, Enhancing Communication, All Behavior Has Meaning, Care for the Caregiver, and Designing Strength-Based Activities. The class size is limited so that each participant has the opportunity to reflect upon the material as it pertains to their situation.

Understanding Dementia The first module in the Family Caregiver Workshop is an in-depth look that distinguishes Alzheimer’s disease and other dementias: the signs and symptoms, diagnostic process, current treatments, and stages of the disease. This information encourages care partners to appreciate the scope of the illness so that they can plan for the future. One family member commented, “Before this meeting, I wasn’t sure what was going on with my mom. I just kept taking on tasks that she no longer seemed able to do. Now I realize that a lot of what was happening was related to her dementia.”

Enhancing Communication This module focuses on the changes in communication for the person with dementia as the illness progresses. Over time, the person with dementia experiences increasing difficulty expressing themselves and understanding others. People may struggle to have their needs and desires known. Brain changes make word-finding difficult. The attention span decreases. It can be challenging to hold a thought long enough to have a lucid conversation. Care partners need to be aware of the difficulty that the person is experiencing. As the person is unable to change, the care partner needs to be willing to adapt.

In the workshop, participants develop their own set of communication keys — shortcut prompts to enhance interactions with people with dementia. Some examples include: slow down, get to eye level, use five-word sentences, know when to back off, or try again. One participant shared, “Wow! Slowing down — it never occurred to me that mom was having trouble taking in information. I was talking fast. I didn’t know she needed me to slow down, to use fewer words. It has made a world of difference.”

All Behavior Has Meaning As caregivers, we need to look for the root causes of challenging behaviors. In the workshop, participants explore possible triggers in the environment, in the person, and in the care partner. We brainstorm environmental challenges: too light, dark, noisy, no obvious cues or signage, unfamiliar places. We investigate behaviors that might be related to the person: pain, fatigue, UTI, arthritis, hearing problems. Behaviors that stem from care partners could be: caregiver stress, not understanding the illness, utilizing the wrong approach, rushing the person, expecting too much or too little from the person with dementia. One daughter shared, “I always thought my dad was just grouchy all the time. He was complaining and we did not know why. It took a while but after taking the workshop I figured out that he was uncomfortable in the chair. We changed the chair and he has been more content.”

Care for the Caregiver and Designing Strength-Based Activities Caring for people with a diagnosis can be a full-time job. Even when we have help, daily concerns can overwhelm us. Self-care cannot be overemphasized. Most care partners have additional obligations. In the workshop, we discuss ways of finding time for ourselves and look to discover new or additional sources of support. Care partners are encouraged to join a support group as a way to balance the caregiving load. The connect2culture program at CaringKind is introduced as a way of connecting care partners to cultural activities throughout the city. An adult son who recently completed the workshop said, “The workshop was life-giving, informative and incredible. . . a true game-changer for me! Thank you for being so excellent at what you do!”

Every year, CaringKind provides practical tools to our client families. If you or someone you know can benefit from our Family Caregiver Workshop, please register by calling 1-646-744-2900. We know it will make a difference!

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