by Kirby Lindsay, posted 8 March 2013
On March 5th, Anita Souza, Early Stage Memory Loss Coordinator for the Alzheimer’s Association (ALZ,) gave a talk to the monthly meeting of Doric Lodge 92. She began with an explanation of the term ‘dementia’ as an umbrella for a set of symptoms severe enough to impair daily function. Alzheimer’s is one type of dementia, among 70 different types total.
Only 5% of people over 65 will have dementia, Souza said, but by age 85, the percentage increases to 48. As she remarked, getting older is one of the major risk factors for this disease. Unfortunately, with an aging population, the U.S. will likely see a huge rise in the number of people afflicted by dementia – and in the number of those who must care for them.
Find Your Resilience
At ALZ, Souza works in education, support and awareness – particularly working with those newly diagnosed. “When you receive a diagnosis,” she observed, “it changes all the plans you had.” She is a staunch supporter of early testing, early diagnosis and early disclosure, so that, “you get to tell people how you want to be treated.” Also, early awareness, she said, “allows you to look back at what has given you resilience,” as you move forward.
“The disease makes you look very hard at those you have in your life,” Souza acknowledged. With this diagnosis, family dynamics won’t change, she observed, but reflection on the weaknesses and the strengths of the community that surrounds the person with the disease can benefit everyone. She also recommended family members – and direct caregivers – “identify what you are comfortable taking on.”
Also, Souza observed, resilience often comes from our support network, but also from our values and from our faith. Long before joining ALZ, Souza worked in long-term care, and saw how rituals can provide a place, “where family can reach,” the person with memory loss. “You can’t learn something new,” when dementia eats away at the memory, she explained, “but you still have very vivid memories of the past, and that is where faith was instilled.”
As a 2005 article from MayoClinic.com explained, “As Alzheimer’s disease progresses, recent events become jumbled and hazy. But songs and prayers from childhood often stay firmly rooted in memory.”
Find Your Roots
Saying prayers together, attending services together, or simply sitting quietly together, can be ways to “meet the person where they are,” Souza explained, “the pressure isn’t on them.” Those with dementia, and their support community, can engage in religious rituals as a ‘failure-free’ activity, often long after regular dialogue has become too difficult.
In 2009, testifying before a Senate hearing on aging, a witness stated, “I’m Maria Shriver – and I am a child of Alzheimer’s.” The former First Lady of California spoke about her father, Sargent Shriver, and his battle with memory loss – and the loss she felt as his daughter. “At the age of 93, my Dad still goes to Mass every day. And believe it or not, he still remembers the Hail Mary. But he doesn’t remember ME … Maria.”
Attending services with a loved one where everyone models a similar action – all stand, kneel, sit, or sing together – can make engaging easier for the person with dementia to follow along. It can also be a relief for a caregiver, exhausted at having to instruct or lead, to have a chance to simply follow as well.
Find Your Faith
Alzheimer’s, and all the other forms of dementia, carry a definite stigma in our society. Those with the disease, and their family and friends, will speak with shame of the deterioration they witness. Obvious signs of memory loss may cause people to shy away from group settings, and familiar routines. Souza recommends the reverse.
Attending a worship service may require an adjustment. It may mean a change of seats – to the back rather than the front, or the handicapped seating area rather than the anonymous middle – or a change of service. It may also mean finding a place of worship more convenient for the caregiver.
An article written by Joseph W. Hager, and published by ALZ, states, “Sometimes…caregivers may be shy about bringing the patient to church for fear of them saying something bizarre, although an informed pastor and congregation can help make the experience less daunting. The social contact is good for the caregiver as well as the Alzheimer’s patient. Social isolation tends to exacerbate memory loss.” (Emphasis mine.)
Find Your Support
For the faith community, interaction with a familiar friend now dealing with dementia can destigmatize this disease, and teach them how to treat those with the disease with dignity. A church community can arrange for educational talks by a physician or someone like Souza from ALZ, who already travels around our region giving such talks.
Another article, in the ‘Aging & Spirituality’ newsletter from Spring 1994, states, “Religious worship is a safe and soothing activity for persons with Alzheimer’s disease and related dementias. It enables them to respond to their faith and spiritual needs through long remembered rituals that connect past and present.”
Dealing with dementia – whether faced with a diagnosis personally, or serving as caregiver – can be daunting, difficult and depressing. Turning to rituals, routines and the comfort of faith can restore resilience, and provide a place of safety and support.
The Central & Western Washington Chapter of the Alzheimer Association offers abundant resources, including support groups, facilitation of family meetings and a 24/7 helpline (at 1-800-272-3900.) Visit the ALZ website to learn more about this organization, and how to get the help needed.
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©2013 Kirby Lindsay. This column is protected by intellectual property laws, including U.S. copyright laws. Reproduction, adaptation or distribution without permission is prohibited.