Alzheimer’s Caregiving: Uncharted Territory for Many

The month of November is both National Family Caregiver Month and National Alzheimer’s Awareness Month. These designations happen to coincide in a very meaningful way.

I have worked in Aging and Disability Services’ Family Caregiver Support Program for many years. The majority of caregivers I’ve worked with have cared for someone who has been diagnosed with dementia.

Alzheimer’s is one of the most commonly diagnosed forms of dementia. Dementia is an impairment in brain functioning resulting in problems with memory and judgement. This is a life-changing diagnosis for the person with dementia and also for their caregiver. Daily routines, expectations, and responsibilities are affected.

For many family caregivers, a dementia diagnosis and its implications are uncharted territory—they are entering a new and unfamiliar landscape in terms of how they relate to and interact with their loved ones. In their day-to-day lives, interacting with someone with dementia can often be a source of uncertainty and stress. Like any change in one’s life situation, acquired skills, tools, and information are essential to cope with the many changes that one will experience.

An observation that is important to communicate to family caregivers is that if someone is diagnosed with a physical illness or medical condition, we are usually not hesitant about asking questions, trying to understand and comprehend the diagnosis, progression of the condition, short- and long-term planning, supporting the individual with the diagnosis, etc. Why should it be any different for someone diagnosed with dementia—a condition affecting the brain and cognitive functioning?

Take the case of Sandra and Larry. Larry’s diagnosis of Alzheimer’s five years into their joint retirement left Sandra wondering, “What does this mean for our future?” Sandra admitted that getting the initial diagnosis was difficult and hard to comprehend. But with her background as a college counselor, Sandra knew that she had to create a plan for their future.

Part of Sandra’s plan included basic education on this brain disease. She gained a better understanding of the impact of Alzheimer’s on behaviors, impairment of previous abilities, the progression of the condition, changes in personality, the ability to communicate, and her role as a caregiver. Education was vital for both Sharon and Larry and their quality of life—they needed to understand its impact on their life going forward, as a shared new reality.

Sharon was also pleased to learn that there is a specialized program for people with dementia called Memory Care and Wellness Services, offered at three Full Life Care sites in King County. Programs like this are often called a win-win for families. This program provided Sandra with a break from her role as a caregiver while Larry attended the evidence-based program for people living with dementia.

In addition, accessing available resources and information in the community counteracts the feeling of isolation experienced by many caregivers. Friends and other family members are often unsure themselves about what this means for their own interactions with the care receiver. Knowing that one is not alone—that there is a vital network and wealth of knowledge and expertise and support available—is an affirming and positive realization in the face of a diagnosis of progressive brain disease.

It has been said that family caregivers like Sandra embark on a “dementia journey.” We hope that accessing dementia-related resources, services, informational sources, and providers can offer meaningful, practical, and ongoing assistance to dementia caregivers. We want to help them navigate their own unique journey feeling fully supported and informed throughout its many challenges.

Contributor Kristine Broome is a caregiver specialist with Aging and Disability Services, the Area Agency on Aging for Seattle-King County. To access caregiver support services, call Community Living Connections at 1-844-348-5464.

Dementia Caregiving Online Resources

• Alzheimer’s Association 24/7 Helpline
• Alzheimer’s Association of Washington
• Community Living Connections
• Dementia Road Map: A Guide for Family and Care Partners (Washington State Dementia Action Collaborative)
• Memory and Brain Wellness Clinic (UW Medicine)

A wealth of Alzheimer’s and dementia support groups are available throughout Seattle-King County. Learn more in the support group article in this issue.