By Paul V. Palange
In the wake of releasing an update of the “Rhode Island State Plan on Alzheimer’s Disease and Related Disorders,” Lt. Gov. Daniel J. McKee took a multi-faceted trip to Taiwan. While he was there, he learned about some of the Taiwanese’s best practices surrounding the treatment of people living with Alzheimer’s disease and their families.
The Taiwan Ministry of Health and Welfare has implemented a long-term care program with two national plans on treating Alzheimer’s and other dementia disorders, according to McKee. For those who like as many details as they can learn, the plans are titled the Taiwan Dementia Plan and Action Plan 1.0 and Taiwan Plan and Action Plan 2.0.
Under the plans, officials launched the Dementia Friendly Society Initiative in 2010 to make communities more accessible to Alzheimer’s patients and their families. Among the key elements of the program is engaging families and other individuals significant to the patients, McKee said.
The initiative was ramped up in 2013 by developing programs for dementia friendly stores, churches and medical facilities. Citing examples of what patients and their families might find in such places and spaces, McKee explained participating retail outlets provide the options of prepaying for items for Alzheimer’s patients and the unconditional return of items the patient should not have picked up.
Dementia friendly locations are designated with stickers on doors and windows, according to McKee, who likes the emphasis Taiwan society puts on reducing stress for Alzheimer’s patients and their loved ones so they can “go through the day as normal as possible.”
Another noteworthy component of the ministry’s efforts is its three-stage training program for health care professionals who treat people with Alzheimer’s and other forms of dementia, McKee said. In the last several years, more than 40,000 caregivers have received the training.
In addition, the government there has connected help lines for professionals and other people providing care to dementia patients, and about 6,000 individuals per year call for assistance, McKee said.
The lieutenant governor, who also chairs the state’s Long-Term Care Coordinating Council, wants Rhode Island officials to adopt policies and take steps that assist with normalizing the lives of Alzheimer’s patients and their families and friends. The important takeaways from Taiwan, he said, include educating society about the many ramifications of dementia disorders; eliminating the stigma surrounding the diseases; and teaching people that Alzheimer’s disease and dementia are not to be taken lightly or joked about. “There is an attempt at humor that is not just cool,” he said.
Another issue that must be addressed, McKee said, is the awful financial impact that caring for Alzheimer’s and dementia patients has on families. There has to be some financial relief, whether it’s with tax credits or another type of assistance, because providing care drains families’ resources and lifesavings, leaving many people on the border of bankruptcy.
McKee is correct. If the patient is still working when diagnosed, the progression of the disease will eventually lead to a loss of income, and some individuals might have made serious errors while handling their finances before the diagnosis.
In addition, caregivers, who are usually family members, are hurt more and more financially as their duties increase with the advancement of the disease. At the onset, people help with activities such as shopping, but the care frequently becomes much more time consuming as the patient needs assistance with tasks of daily of living, including bathing and dressing. That sort of commitment can put a financial burden on caregivers as a result of lost wages, career disruptions and out-of-pocket expenses.
Furthermore, many family members must take on those duties because the nonmedical care expenses are not covered by Medicare or traditional health insurance.
McKee pointed out that Dementia Training for Life LLC is helping to decrease the stress of grappling with Alzheimer’s and related diseases by offering a program called Memory Cafes.
The company’s website states: “A Memory Café is an opportunity for individuals with all forms of memory loss, and their care partners, to meet others with similar concerns, socialize, learn new skills and support each other as they travel their path with dementia. The significant impact of providing care on care partners, in regard to their health, socially and financially, is an additional hardship. Memory Cafés help to bridge that hardship with resources, skills, support and friendships. The number one goal at all Memory Cafés is to have fun. Cafés are free and open to anyone with dementia, their care partners, family and friends.”
The cafes are conducted at Temple Beth-El, 70 Orchard Ave., Providence, the third Thursday of the month from 1 to 2:30 p.m.; the Warren Senior Center, 2252 Main St., the first Thursday of the month from 1 to 2:30 p.m.; the Tiverton Senior Center, 207 Canonicus St., the third Monday of the month from the 1 to 2:30 p.m.; the Newport Public Library, 300 Spring St., the fourth Thursday of the month from 10 to 11:30 a.m.; the Lincoln Senior Center, 150 Jenckes Hill Road, the last Wednesday of the month from 10 to 11:30 a.m.; the Westerly Senior Center, 39 State St., the first Wednesday of the month from 10 to 11:30 a.m.; and the Church of the Transfiguration, 1665 Broad St., Cranston, the second Friday of the month from 10 to 11:30 a.m.
There is no doubt of the emotional and financial impact of Alzheimer’s disease and dementia disorders, and Congress recognized that with passage of the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act. The bill creates an Alzheimer’s public health infrastructure across the country to implement effective Alzheimer’s interventions focused on public health issues such as increasing early detection and diagnosis, reducing risk and preventing avoidable hospitalizations.
Under the act, the so-called infrastructure is expected to be built through Alzheimer’s and Related Dementias Public Health Centers of Excellence, which will provide funds to state, local and tribal public health departments and increase data analysis and timely reporting.
Let’s hope the act is fully funded and the intended action is taken.