Resources Blog Walking the dementia journey...together

Walking the dementia journey...together

Many resources and activities exist in this community to help individuals live with dignity and joy, while building stronger connections for those living with dementia, their care partners, and the community.
Last updated: November 11, 2021
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Dementia. A word that is still too often whispered…hidden...and misunderstood. The internet and print media are filled with statistics related to aging and the increased risk for dementia. Messages from news media to entertainment are filled with the “tragedy narrative” of dementia, which promotes fear, stigma, and unnecessary isolation for those living with dementia and their care partners. Together, we can work to change the cultural narrative and help those on the dementia journey discover that life can still be good and meaningful—because no one’s value is determined by their ability to recall the recent past.

Research is showing us some keys to decreasing the risks of brain changes that manifest in dementia symptoms. These preventive measures include social engagement, sleep, mental stimulation, stress management, Mediterranean diet, and exercise.1 Research on prevention and treatment is promising, but slow, and, regardless of preventive measures, some people still develop symptoms of dementia.

Dementia Together, a local nonprofit in Fort Collins, is working to ensure that no one has to walk the dementia journey alone. Many resources and activities exist in this community to help individuals live with dignity and joy, while building stronger connections for those living with dementia, their care partners, and the community. Through education and enrichment, we can make living well with dementia the expectation, not the exception. We can lead and support innovative efforts to enhance well-being and offer hope.

Education, enrichment, hope

Education: Education is focused on empowering anyone coming in contact with someone living with dementia to interact effectively to promote dignity and well-being. By sharing simple, positive strategies, staff in senior care, healthcare, law enforcement, service organizations, and other businesses are learning ways to promote well-being for those who are experiencing dementia symptoms.

The framework from which we coach and offer education with care partners—through support groups, classes, and family consultations—is the SPECAL® method. This method originated in the UK as a pioneering person-directed, family-driven model for positively managing the disability of dementia (Contented Dementia Trust, Burford, England, https://contenteddementiatrust.org/). The experts are the people living with dementia, and the SPECAL approach invites us to listen to them and learn from them. Families and care partners who learn to listen well to their loved ones and put into practice these rules and tools discover how to sustain lifelong well-being. Evidence-based research with Colorado State University has shown that care partners experience less stress and are able to more easily identify the positive aspects of caregiving after participating in a SPECAL course.

Enrichment: Being together is essential especially because the dementia journey so easily leads toward isolation and loneliness. In collaboration with the Fort Collins Symphony, the Lincoln Center, Alzheimer’s Association, and Larimer County Office on Aging, Dementia Together has resumed the B Sharp Arts Engagement program. This program allows 30 couples living with dementia to attend five symphony performances and private receptions and participate in research evaluating the effect of the experience on mood, sense of connection, and cognition.

Memory cafés are another means of enrichment. These are themed social gatherings for people living with dementia and their care partners. Participants reminisce, play games, sing, and laugh. Prior to the pandemic, local groups met monthly at six locations in northern Colorado. During the pandemic, memory cafés have been meeting virtually every week, and participants describe these as their “lifeline.” Memory cafés in care communities provide an opportunity for loved ones outside facilities to attend the same gatherings with loved ones in care communities through a virtual format. With COVID-related visiting restrictions, this opportunity for connection has been invaluable. Regardless of theme, the agenda of any memory café is joy.

Hope: It’s no secret that 2020 was a year marked by anguish at separation and distancing, and 2021 has been a year of uncertainty and fatigue. The future is unknown, but what we do know is that the need for services is not going away. Dementia Together and similar organizations are “in the meantime” organizations. In the meantime, until cures for the various causes of dementia are found, we can make life-changing differences now for people striving to live well with dementia. For our friends living with dementia today, their hope may not be in a future cure—it’s in the current care. We are committed to helping people care well…to helping our communities embrace neurodiversity…to supporting families, who hold the key to creating lifelong well-being for their loved ones…and we are committed to listening to the voice of the experts living with dementia to inform all that we do.

Other resources

Alzheimer’s Association, https://www.alz.org

Larimer County Office on Aging, https://www.larimer.org/humanservices/aging/ooa

 

Submitted by Cyndy Luzinski, founder and executive director of Dementia Together.

1 https://www.pbs.org/video/alzheimers-what-you-can-do-kop9mw

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Dementia Together (formerly, Dementia-Friendly Communities of Northern Colorado) started as a volunteer initiative in 2015 and evolved into a local nonprofit organization whose mission is to ensure that no one has to walk the dementia journey alone.

Dementia Together doesn’t charge for services so that cost is never a barrier to participation. Corporate sponsors, grants, and private donors make that possible. For more information, please call 970-305-5271, email help@dementiatogether.org, or visit dementiatogether.org.