Many of us recognize that dementia is not the inevitable result of aging, but we might not understand how dementia progresses and how to create a welcoming environment for individuals with dementia and their caregivers. At the Faith Community Summit on May 29, 2019, experts discussed the causes and effects of dementia, how to create dementia friendly communities and communicate effectively with individuals who have dementia, and the array of resources available to caregivers in Northern Virginia.
The summit, held at Insight Memory Care Center in Fairfax, Virginia, was sponsored by AARP, Insight Memory Care Center, Fairfax County Area Agency on Aging, George Mason University, and the Virginia Geriatric Education Center.
Social worker Ruth Reagan of Goodwin House Bailey’s Crossroads in Falls Church, Virginia, discussed how to create dementia friendly communities. These are communities where people understand the effects of dementia and how to make a difference in the lives of people with dementia.
As explained in a workbook developed by Dementia Friends Virginia, dementia is not a specific disease. Instead, “dementia” describes a range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities.
For example, normal aging may bring occasional forgetfulness, but dementia causes memory loss that disrupts daily life. Normal aging might result in vision changes related to cataracts, while dementia can cause difficulty in understanding visual images and spatial relationships.
Reagan explained that dementia first affects the part of the brain that controls complex thinking skills, while the part of the brain that controls emotions continues to function. She recommended that caregivers and community members appeal to positive emotions. Create interactions that inspire feelings of happiness and contentment rather than anxiety and sadness. If your family member doesn’t recognize you, don’t insist that he or she call you by name.
Most important for the caregiver: always consider the individual’s feelings and treat him or her with dignity and respect. And be aware of your own feelings. Adjust your expectations and focus on the positive moments.
Reagan also noted that dementia affects families, with loneliness common among family caregivers.
“The person with dementia stops worrying about certain things, but the family member does not,” Reagan said. “Think about how you can help a family member.”
To turn an understanding of dementia into action, take steps like staying in touch with an individual with dementia, supporting dementia friendly efforts in the community, and participating in local advocacy events.
Reagan emphasized five key messages from Dementia Friends:
- Dementia is not a normal part of aging.
- Dementia is caused by diseases of the brain.
- Dementia is not just about having memory problems; it can affect thinking, communicating, and doing everyday tasks.
- It is possible to have a good quality of life with dementia.
- There is more to the person than the dementia. Individuals with dementia are a valuable part of the community.
Communicating with Individuals with Dementia
Toni Reinhart, founder of Positive Dementia Care Training, LLC, in Herndon, Virginia, provided hands-on training for effective communication with individuals with dementia.
Expanding upon Reagan’s discussion, Reinhart explained how the areas of the brain responsible for critical thinking, language, sight, and other functions shrink as dementia progresses. For example, she said, most people obtain information primarily through sight, but the brain’s vision center shrinks noticeably in individuals with dementia. She advised the audience to practice a “positive physical approach”* when greeting individuals with dementia, providing visual and voice cues before touching.
Singing, humming, and moving to a rhythm are good ways to communicate with individuals with dementia. If an individual is upset, validate that emotion before trying to de-escalate the situation. Try not to say “no” and instead redirect or reframe the issue.
Reinhart pointed out that we would hardly ask a friend wearing a cast on her broken leg to get up and get us a drink. Similarly, she said, if we could see the physical damage to the brain that results from dementia, we would slow down and be more patient.
Community Resources for Caregivers
Lindsey Vajpeyi, Director of Education and Outreach at Insight Memory Care Center, encouraged caregivers of individuals with dementia to take advantage of the community resources available in Northern Virginia.
“There’s a correlation between the health and well-being of the caregiver and the quality of care they can provide,” she said.
Vajpeyi emphasized the value of developing a “care team” when an individual is diagnosed with dementia. The team might include health care providers, care managers, elder law attorneys, financial advisors, health insurance advisors, and dementia consultants. Sources of emotional support could range from family, friends, faith communities, and volunteer organizations to therapists, counselors, and support groups.
Vajpeyi encouraged caregivers to seek out support, companionship, and fun. Families can socialize and participate in group activities at “memory cafes.” Individuals with dementia and their caregivers can sing familiar songs with groups such as the Forgetful Friends Chorus in Manassas and the Sentimental Journey Singers at Insight Memory Care Center.
Vajpeyi also listed helpful options for those caring for a family member in the home, such as adult day centers, home health care providers, and live-in caregivers, as well as housekeeping, lawn care, meal, and other services.
“Time off provides rest and improves coping skills,” she said. “Take care of yourself – ask for and accept help, be socially and physically active, adopt a healthy lifestyle, and tell your own health care provider what’s going on in your life.”
Local resources listed by Vajpeyi include: the Fairfax County Area Agency on Aging’s intake line (703-324-7948); the Golden Gazette; the Beacon; ElderLink, for information on locally available services; Shepherd’s Centers in Northern Virginia, for support services and enrichment programs; Neighbor to Neighbor and Village networks, which support aging in place; and CareRing for a daily “check-in” telephone call.
AARP offers many informational resources for caregivers. To request a group presentation on caregiving by a member of AARP’s Speaker’s Bureau in Northern Virginia, email firstname.lastname@example.org or call 866-542-8164.
* Positive Physical Approach is a registered trademark of Positive Approach, LLC, registered in the United States.