Although Alzheimer’s disease affects both men and women, the condition is gaining attention as a women’s health issue. There is no known physiological link between gender and development of the disease, but statistics show that more women than men are affected. According to the Alzheimer’s Association, almost two-thirds of Americans diagnosed with Alzheimer’s disease are women, as are more than 60 percent of caregivers for people with Alzheimer’s.
“Alzheimer’s disease is certainly a women’s issue,” says Ruth Drew, MS, LPC (licensed professional counselor), director of Family and Information Services for the Alzheimer’s Association. “Women are at the epicenter of the Alzheimer’s crisis.” Because the disease has a potentially devastating impact on both those diagnosed and their caregivers, Alzheimer’s awareness is essential for anyone, man or woman. But with greater impact among women, it is most certainly a key women’s health concern.
This dreaded disease fits into a category of cognitive, or mental and reasoning, disorders known as dementia. The Alzheimer’s Association (alz.org) defines dementia as a “decline in mental ability severe enough to interfere with daily life.” There are several forms of dementia, but Alzheimer’s is the most common: it comprises 60 to 80 percent of dementia cases.
Alzheimer’s is generally a disease of aging; the majority of patients are age 65 or older. It is not, however, a normal part of aging. Younger individuals can also be affected: about 200,000 people under age 65 are living with the disease.
It may start with less severe signs—sometimes subtle enough to blame on stress, fatigue, or a passing illness—and progresses to more-severe stages. There are trademark symptoms of Alzheimer’s, but the disease tends to differ from patient to patient. As Alzheimer’s begins to progress, patients have increasingly more trouble, with issues such as getting lost, misplacing objects, using poor judgment, failing to complete daily tasks, having difficulty with money and finances, repeating questions, exhibiting personality and mood changes, and experiencing hallucinations, delusions, and paranoia.
Christine is a dementia survivor, talking about what it feels like and what you can do to help in the ongoing battle against brain loss. Issues that ignite her passion include standards of palliative and residential care, stigma and the need for a dementia-friendly society, early diagnosis and treatment, and the need for cures for the many diseases that cause dementia.
Christine’s message is always an inspirational message of hope and survival. She has attended and has spoken at many Alzheimer’s disease International (ADI) conferences, working hard to change attitudes towards people with dementia, and to talk about what it is like to live with dementia and what issues need to be addressed. Christine continues her battle against ongoing brain damage, yet is still speaking out for all those unwilling or unable to do so.
She has seen progress in the worldwide Alzheimer’s movement to include people with dementia at conferences, and in increasing the level of encouragement and support. But there is still a very long way to go before people with dementia are no longer discriminated against, and before we achieve a global dementia-friendly society. She was part of a live panel discussion on ABC radio on the 20 August 2014 in Canberra, hosted by the Alzheimer’s Australia Dementia Research Foundation as part of National Science Week. The topic was towards a world without dementia – prevention, cure and care, and it was broadcast on ABC radio national and her story was also featured on the ABC’s Australian Story, broadcast on 30 June 2014.
Christine is a member of the Steering Committee of the Qld Statewide Dementia Clinical Network, and, until recently, a Consumer Member of Caboolture Hospital Clinical Council from 2015-2016. She has also been appointed to the Cognitive Impairment Advisory Group of the Australian Commission on Safety and Quality in Health Care. Christine also was a member of the Alzheimer’s Australia Consumer Dementia Research Network from 2010 – 2015. As a representative of this network she was appointed to the Scientific Panel of the Alzheimer’s Australia Research Foundation in 2014. Through this work, Christine was once again involved in research proposal assessments and decision making, as she was before her diagnosis.
On the other hand, Mary Margaret Lehmann describes herself as “a wife, a mother, a grandmother.” In 2009 when her husband, Ken, was diagnosed with Alzheimer’s, she added “caregiver” to that list. Her experience has been filled with challenges but also incredible joy.
By taking on the role of caregiver for Ken, Mary Margaret has accepted a massive responsibility that can bring real challenges. The Alzheimer’s Association explains that with the physical and emotional burden of caregiving, caregivers run the risk of significant healthcare costs of their own, often experience high stress levels, and have an elevated risk of depression. Many caregivers have to leave their jobs to meet the demands of caregiving, as well. Because more women than men are caregivers, women are more vulnerable to these complications.
When Mary Margaret began her journey as a caregiver, she quickly learned that she would have to redefine herself and—to some extent—her relationship with Ken. “I think of myself as 100 percent wife/care-partner/caregiver,” she says. She is always on duty: “I am compelled to monitor, oversee—to be watchful and aware of everything he does.”
The most difficult part of caregiving, Mary Margaret says, is personal. “The biggest challenges I find are the role reversals, having to make decisions myself,” she explains. “I am still learning to balance the fine lines that define wife, care-partner, and caregiver.”
Mary Margaret is meeting the challenges of caregiving with a great support system—friends, family, and medical and professional resources. Ken also continues to be a source of strength, as she keeps in mind lessons learned during their life together. “I am grateful for my husband, who has taught me to live one day at a time, one minute at a time—to be present.”
Mary Margaret has found that, as a caregiver, she needs to care for herself as well. “I have learned the importance of first taking care of myself,” she explains. While some caregivers might struggle with making time for themselves—feeling that it is secondary to caring for their loved one—Mary Margaret says that the opposite is true: by caring for herself (even with simple treats like a pedicure), she is a better caregiver. “When I feel good, everyone around me feels good.”
Despite the extensive difficulty of caregiving, Mary Margaret is finding rewards in the role. She says that she and Ken have a new appreciation for their lives: “We no longer take life for granted or are complacent. We have identified what is really important in life and embraced that.”
Mary Margaret participates in several caregiving support groups, where she has found that 90 percent of participants are women. She says that this community is “nurturing, compassionate, sensitive, and empathetic”—qualities that she explains, while not exclusive to women, are essential to mothering and carry over well to caregiving.
Mary Margaret reminds her community of Alzheimer’s caregivers that “there is life after a diagnosis.” She acknowledges that there are hard days and grief and that it is okay to take time to process the challenges and the setbacks. But she encourages others to remain focused on the positive: “Seek joy in each day.”
Source: awomanshealth.com/ christinebryden.com
