When Leslie Woodfill’s mom started showing signs of dementia, the family felt confused and lost.
They couldn’t get a solid diagnosis, and her father had to sell his business to become a full-time caregiver. The frustration was stressful for everyone and her mother didn’t want anyone to know about their struggles.
Woodfill, who now coordinates special events for the local Alzheimer’s Association Chapter, is hopeful that the Washington State Plan to Address Alzheimer’s Disease and Other Dementias, passed by the state legislature and signed by the governor in 2014, will help families like hers.
“It shouldn’t be a stigma,” Woodfill said. “It’s an illness. We need to learn how to treat it.”
The Alzheimer’s plan and the Caregiver Advise, Record, Enable (CARE) Act are two significant pieces of legislation that focus on helping family caregivers and the aging.
The Washington State Plan to Address Alzheimer’s Disease and Other Dementias: The goal of the state plan is to help coordinate communication, research and advocacy for the disease that is the third leading age-adjusted cause of death in Washington state. While death rates of cancer, stroke and heart disease have declined, the death rate for Alzheimer’s is on the rise with about 107,000 people in the state with Alzheimer’s or other dementias. By 2040, that number is expected to grow to more than 270,000, according to the state plan.
Most states have passed similar action plans – including Idaho in 2012 – after the National Alzheimer’s Project Act was signed into law in 2011, acknowledging that Alzheimer’s disease and related dementias are a major public health issue that will only increase as the population ages and grows.
Now Washington and Idaho both have working groups focused on carrying out the details of each state plan, which focus on increasing public awareness, providing education and training, coordinating support services for patients, family members and caregivers throughout the state, looking at finances and regulation while developing an ongoing source of data collection.
Woodfill hopes the state plan will help improve diagnoses by doctors and help people understand Alzheimer’s and other dementias, and how to find resources without having to battle the stigma.
She compares it to when nobody talked about breast cancer because nobody dared say the word “breast” in public.
Her mother died in 2014 after eight years of living with dementia with Lewy bodies that affected her brain and movement, giving her Parkinson’s-type symptoms. It’s the same disease that recently made headlines after actor Robin Williams’ death; an autopsy after his 2014 suicide revealed he had the illness.
Initially, Woodfill’s mother got a general diagnosis of some type of dementia. It wasn’t until Woodfill began attending a support group that she noticed her mother’s symptoms were different from the other dementia patients. A friend suggested they consult a neurologist. That’s when the family received the Lewy bodies diagnosis, which requires different medications.
“You need to get the diagnosis and find out what’s going on,” she said. “Then you can learn how to care for your person.”
Caregiver Advise, Record, Enable (CARE) Act: The goal of this act is to give family caregivers more information and training on how to manage medications, treat wounds and other basics when their family member is released from the hospital.
“The whole intent of the CARE Act is really to support caregivers,” said Advocacy Director Cathy MacCaul of AARP Washington, adding that unpaid family caregivers – more than 1.2 million in Washington – are the backbone of the state’s care system and provide more than two-thirds of home care for older residents and adults with disabilities. A 2012 AARP study concluded that caregivers nationwide provided the equivalent of $450 billion in unpaid care in 2009.
The state AARP worked with the Washington State Hospital Association on writing the legislation that passed unanimously. Similar acts have been enacted in 21 other states. MacCaul said hospitals will phase it in over time. She said patients and caregivers should know that they can ask for training and other information that will help with the transition home. Some hospitals already have transition programs as part of the effort to reduce hospital re-admissions.
MacCaul told about a woman who learned late on a Friday night that a Seattle hospital was discharging her husband. They had a three-hour drive home and the husband was in pain and not too long out of surgery.
“They gave her two big bags with gauze and bandages,” MacCaul said, adding that the wife did not feel prepared and wanted more interaction with a doctor or nurse.
Specifically, the act will require medical facilities to record the name of the family caregiver and then notify them if their loved one is to be discharged to another facility or sent home. The facility also must provide an explanation and live instruction of medical tasks such as medication management, injections and wound care the caregiver will provide at home.
“We want to keep people out of the ER,” MacCaul said.
The Washington Legislature passed the Washington State Plan to Address Alzheimer’s Disease and other Dementias in 2014. This year, the governor launched the plan which allows the Dementia Action Collaborative to start its work. This story has been updated to reflect this information.
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