Category Archives for Mental Health

RI’s State Alzheimer’s Plan Won’t Sit on Dusty Shelf

Published in Pawtucket Times on November 1, 2013

Seeing a huge rise in Alzheimer’s Disease over the last two years, federal and state officials are gearing up to strategize a battle to fight the impending epidemic.

According to the Rhode Island Chapter of the Alzheimer’s Association, in 2013 an estimated 5 million Americans age 65 and older have Alzheimer’s disease. Unless more effective ways are identified and implemented to prevent or treat this devastating cognitive disorder, the prevalence may well triple, skyrocketing to almost 16 million people.

Furthermore, national health care costs are spiraling out of control, says the nonprofit group’s Facts Sheet. By 2050, it’s estimated that the total cost of care nation-wide for persons with Alzheimer’s disease is expected to reach more than $1 trillion dollars (in today’s dollars), up from $172 billion in 2010.

Meanwhile, with 24,000 Rhode Islanders afflicted with Alzheimer’s Disease, every Rhode Islander is personally touched, either caring for a family member with the cognitive disorder or knowing someone who is a caregiver or patient.

In February 2012, the U.S. Department of Health and Human Services released its draft National Plan, detailing goals to prevent or treat the devastating disease by 2025. Almost six months later, in May 2012, the Rhode Island General Assembly passed a joint resolution (The same month that the final National Plan was released.), signed by Governor Lincoln Chafee, directing the state’s Long Term Care Coordinating Council to lead an effort to create a state-wide strategy to react to Rhode Island’s growing Alzheimer’s population. Almost one year later, a 122 page document, the Rhode Island State Plan for Alzheimer’s Disease Disorders, was released to address the growing incidence in the Ocean State.

In July 2013, with the graying of the nation’s population and a skyrocketing incident rate of persons afflicted with Alzheimer’s disease, the Chicago-based Alzheimer’s Association and the U.S. Centers for Disease Control (CDC) and Prevention released a 56 page report that called for public health officials to quickly act to stem the growing Alzheimer’s crisis. .

Battle Plan Against Alzheimer’s Disease

The State’s Plan to battle Alzheimer’s Disease is the culmination of a yearlong effort co-chaired by Lt. Governor Elizabeth Roberts and Division of Elderly Affairs Director Catherine Taylor, in partnership with the state chapter of the Alzheimer’s Association.

Much of the research and writing was conducted by six subgroups (Caregivers, Access, Legal, Workforce, Long-Term Care, and Care Delivery & Research) formed to identify and tackle the many challenges that Alzheimer’s disease poses to individuals, their families and to the health care delivery system. .

At their meetings, the subgroups drew upon the expertise of staff at the Geriatric Education Center at the University of Rhode Island, the Brown University Center for Gerontology and Health Care Research, the Brown Brain Bank, and the Norman Price Neurosciences Institute and the Alzheimer’s Prevention Registry

Public input was crucial in the development of the State Plan. Eight listening sessions were held across the Ocean State, two of them held with Spanish translators, at public libraries and local YMCAs, to get the opinions of those with the cognitive disorder, caregivers, and health care professionals. The probate judges association, law enforcement and other groups with unique perspectives on Alzheimer’s Disease were invited to listening sessions, too. Finally, the draft plan was made available for a ten-day public comment as part of the extensive outreach process.

The narrative in each section, nicely pulled together by Lindsay McAllister, the Lt. Governor’s Director of Health Policy, reflected many of the concerns and challenges identified by many presentations and discussions in each of the subgroup meetings over several months. The State Plan details 30 pages of recommendations outlining solutions and specific steps to be taken for preventing and caring for persons with Alzheimer’s Disease for six identified areas.

A Sampling of Recommendations

The plan encourages the development of social media networks as resources for caregivers, also calling on utilizing existing caregiver newsletters to detail more information about the Ocean State’s specific programs and services. It also calls for better training and education opportunities (for young children) to help them understand the devastating disorder and the creation of a two-week certification program, offered by local colleges and universities with input from the state’s Alzheimer’s Association.

In addition, the plan recommends the timely dissemination of research findings and best practices in nursing facilities, dementia care units, and home care to providers and families. Meanwhile, recommendations note the need to standardize dementia training and educational programs as well as the certification of facilities that offer dementia-specific care so that individuals and families impacted by Alzheimer’s Disease can rely upon high quality “dementia capable” care that they can find more easily.

The plan pushes for all Employee Assistance Programs (EAPs) to receive information about referral resources for employees requiring more intensive or long-term mental health services. EAP’s might also provide educational and informational resources on caregiver support for families dealing with Alzheimer’s disease.

Another key recommendation is the development of an internet resource referred to as the Rhode Island Alzheimer’s Disease (RIAD) Web Site. The site would enable better coordination among researchers and clinicians and assist them in recruiting participants for clinical trials and research studies. It would also provide consistent centralized support to individuals living with Alzheimer’s and their families by making practical care giving information readily and easily available.

“AARP has a long history of supporting Alzheimer’s patients and their families,” said AARP Rhode Island Advocacy Director Deanna Casey. “We applaud the effort in Rhode Island and Lt. Gov. Roberts’ efforts on behalf of those who suffer from the disease,” she says.

Casey says “far too many of our nonprofit’s 130,000 Rhode Island members are painfully familiar with Alzheimer’s, and the work of the many stakeholders in this effort is further indication of the great need to recognize our collective responsibility to help families through what is a most challenging journey.”

“Rhode Island has a tremendous opportunity to be a national leader in response to this disease,” she believes.

Briefing by Key Supporters

Two days ago, the full Alzheimer’s Work group kicked off the implementation phase of the Rhode Island State Plan on Alzheimer’s Disease & Related Disorders, discussing how to move forward with the goal of getting the recommendations up and running.

In Room 116 at the State House, Lt. Governor Elizabeth Roberts and Director Catherine Taylor of the Division of Elderly Affairs were clearly pleased to see their year-long initiative moving into its implementation phase to assist the State to handle a growing number of persons with Alzheimer’s Disease.

On the heels of a nationally released plan to address the Alzheimer’s epidemic, Taylor tells me that it was “great timing” for the Rhode Island General Assembly to enact a joint resolution to create a state plan to “respond to Rhode Island’s specific needs and gaps of service.” She credits the Rhode Island Chapter of the Alzheimer’s Association with the getting the ball rolling on this major health care policy initiative.

According to Lt. Governor Roberts, public sessions where care givers and people with Alzheimer’s Disease told their personal stories allowed the Subgroups to understand the personal impact of the devastating disease on both the afflicted and caregivers. For instance, the listening sessions made it very clear that the specific care needs of middle age adults with early onset Alzheimer’s Disease is quite different from those who are decades older, she said. Taylor agreed, citing adult day care eligibility requirements which keep those under age 60 from participating in this program, one that provides respite care to caregivers.

Lt. Governor Roberts states “younger people can not relate to programs that are developed for older people.” The patient must become the center of treatment rather than the treatment geared to age, she says.

Both Lt. Governor Roberts and Taylor do not want to see the State Plan sit on a dusty shelf, noting that it now becomes important to implement the written plan’s recommendations. “Let’s get the ball rolling now,” says Taylor.

While many of the State Plan’s recommendations may take time to implement, some are easy to implement like a Spanish language support group, says the Lt. Governor. Taylor states that RI has already requested a modification to the Medicaid waiver to expand Adult Day Health Center eligibility to individuals younger than 60 who have a diagnosis of Alzheimer’s.

Senior Police and Fire Advocates need to be trained in every Rhode Island community about Alzheimer’s Disease and resources available for caregivers, states Taylor. “These individuals know those who need programs and services in the community,” she notes, adding that an information conference is scheduled this week to train these individuals.

Lt. Governor Roberts believes that the State plan is a “living document” and it will be around as long as there is one person with Alzheimer’s Disease.”

To review the State plan go to http://www.ltgov.state.ri.us/alz/State%20Plan%20for%20ADRD%202013.pdf.

Herb Weiss, LRI’12, is a writer covering aging, health care and medical issues. He can be reached at hweissri@aol.com.

National Report Grapples with Impending Alzheimer’s Epidemic

Published in the Pawtucket Times, July 25, 2013

.This 56 page report must not sit on a bureaucrat’s dusty shelf.

With the graying of the nation’s population and a skyrocketing incident rate of persons afflicted with Alzheimer’s disease, the Chicago-based Alzheimer’s Association and the U.S. Centers for Disease Control (CDC) and Prevention release a report last week to address a major public health issue, an impending Alzheimer’s disease epidemic on the horizon.

Researchers say that in 2013, an estimated 5 million Americans age 65 and older have Alzheimer’s disease. Unless more effective ways are identified and implemented to prevent or treat this devastating cognitive disorder the prevalence may triple, skyrocketing to almost 14 million people.  Simply put, Alzheimer’s disease is now the 6th leading cause of death and 5th among those 65 to 85 years of age.

A Call to Arms

A July 15, 2013, CDC, the federal agency charged with protecting public health and safety through the control and prevention of disease, injury, and disability, and the Alzheimer’s Association, the world’s leading voluntary health organization in Alzheimer’s care, support and research, unveiled The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013-2018 at the 2013 Alzheimer’s Association International Conference in Boston.

The released report calls for public health officials to quickly act to stem the growing Alzheimer’s crisis and is a follow-up to the 2007 The Healthy Brain Initiative: a National Public Health Road Map to Maintaining Cognitive Health.

“The public health community is now paying greater attention to the Alzheimer’s epidemic that millions of families have been facing for decades and that is poised to drastically increase,” said Robert Egged, Vice President of Public Policy at the Alzheimer’s Association. “On the heels of the 2012 release of the country’s first-ever National Alzheimer’s Plan, the Alzheimer’s Association and CDC have partnered again to create a tool for public health officials to improve the quality of life for those families and advance cognitive health as a integral component of public health,” says Egged.

Released five years ago, the original Road Map addressed cognitive health and functioning from a public health perspective and provided a framework for the public health community to engage cognitive health, cognitive impairment, and Alzheimer’s disease and other dementias. More than 280 experts in the field contributed to this new Road Map report that outlines specific actions steps that state and local public health officials can take to promote cognitive functioning, address cognitive impairment for individuals living in the community and help meet the needs of caregivers.

While federal agencies play a critical role in leading and funding efforts to address Alzheimer’s disease, state and local health departments organize and provide public health services at the community level.

“The goal of the Healthy Brain Initiative is to enhance understanding of the public health burden of cognitive impairment, help build evidence-based communications and programs, and translate that foundation into effective public health practices in states and communities. This Road Map provides guidance to states, communities, and national partners to plan for and respond to this major public health issue,” said Lynda Anderson, PhD, Director of the Healthy Aging Program at CDC.

A former Assistant Secretary at the U.S. Administration on Aging, Bill Benson, now a managing partner of Silver Spring, Maryland-based, Health Benefits ABC, notes that the cost of providing care to people with Alzheimer’s disease will have a drastic impact on the nation’s economy due to the cost of lost productivity, and the care costs for those no longer able to care from themselves. “This does not include the profound personal impact and consequences to those who suffer from Alzheimer’s and to their loved ones,” he says.

“The scope, cost and the extraordinary burden both to individuals and to society make it a true health crisis,” says Benson, stressing that public health officials need to know more about the disease and those who have it, better ways to diagnosis it.  There must also be a better understanding of the economic impact and programs and services that are proven to ease the burden of those who suffer from it and their caregivers, he adds.

Action Steps for Local Communities to Follow

The Road Map report includes more than 30 action steps that the public health community can take at the federal, state and local levels over the next five years to address cognitive health and cognitive impairment from a public health perspective. The actions are intended as a guide for what state and local public health officials could do – on their own or with other national, state and local partners. Agencies are encouraged to select those actions that best fit state and local needs and customize them to match priorities, capabilities and resources.

As to specifics, the Road Map report calls for improved monitoring and evaluation of persons with dementia including Alzheimer’s disease and younger onset as they relate to employment and employers, and defining the needs of these individuals and their caregivers.  Also, increased support should be given to state and local needs assessments to identify racial/ethnic; lesbian, gay, bisexual, and transgender; socioeconomic; and geographic disparities related to cognitive health and impairment.

Public health officials must educate and empower the nation in confronting the epidemic of Alzheimer’s disease by promoting advance care planning and financial planning to care partners, families, and individuals with dementia in the early stages before function declines.  They can and promote early diagnosis.

The Road Map report urges that sound public health policies be developed and partnerships created to collaborate in the development, implementation, and maintenance of state Alzheimer’s disease plans. It also recommends that state and local government integrate cognitive health and impairment into state and local government plans (e.g. aging, coordinated chronic disease, preparedness, falls, and transportation plans).

Finally, the Road Map report also recommends that strategies be developed to help ensure that state public health departments have expertise in cognitive health and impairment related to research and best practices.  Support must also be provided to continuing education efforts that improve healthcare providers’ ability to recognize early signs of dementia, including Alzheimer’s disease, and to offer counseling to individuals and their care partners.

A Local View

Maureen Maigret, policy consultant for the Senior Agenda Coalition of RI coordinator of the Rhode Island Older Women’s Policy Group, agrees with the assessment of theRoad Map report, especially with the Ocean State having the “highest percent of persons age 85 and over in the 2010 Census and this is the population that is growing fast and most likely to have dementia.”

Maigret notes the economic impact will have significant impact across our economy for the state budget and for individual families. “It is imperative for our public officials to promote programs to identify those with early cognitive problems and implement policies to strengthen community and caregiver supports that will help persons to safely remain in home and community settings as long as possible, she says.

The Rhode Island General Assembly passed legislation this year that requires caregiver assessments in the state Medicaid long term care system.  “It’s a good first step in helping caregivers. But we must do so much more to inform the public about available resources, to adequately fund assistance programs such as RIde, Meals on Wheels and respite services and to promote cognitive screening as part of annual wellness visits funded by Medicare,” she says.

“Having a clear active mind at any age is important but as we get older it can mean the difference between dependence and independent living,” says Executive Director, Donna McGowan, of the Alzheimer’s Association-Rhode Island Chapter. “We are excited that the CDC has partnered again with the Alzheimer’s Association to create a tool for public health officials to improve the quality of life for those families afflicted by the disease,” she says.

For more information on The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013-2018, visit alz.org/publichealth. For more information on Alzheimer’s disease and the Alzheimer’s Association, call 1-800-272-3900 or visit alz.org®.

 

The ABC’s of coping with the holiday blues – Local Commentary

Published in the Pawtucket Times on December 14, 2012

Chestnuts roasting on an open fire, along with green wreaths with red ribbons and brightly colored lights on decorated evergreen trees may elicit pleasant thoughts about the upcoming holidays; however, these thoughts might just tear open old wounds and bring to the surface bad memories, triggering stress, tension, and even depression.

Not every family gathering with your parents, siblings, children, or grandchildren will be as serene as a Norman Rockwell painting. Of course, everyone has heard horror stories involving holiday family gatherings.

Surviving the stress of Family Visits Allison Bernier, LICSW, associate director of Wellness Employment and Network Services, at the Providence Center, notes that while the holiday season can be a time of family celebration, joy, and companionship for many people, it can also be a very stressful time.

“High expectations, disrupted routines, dealing with loss or separation from loved ones, financial strain, and time constraints can all exacerbate anxiety and depression,” she says.

Bernier, who has 15 years under her belt employed as a social worker, and who, for the past six years, has provided one-to-one counseling to clients, offers common sense tips on how to survive stress that can be ignited by family gatherings.

Fighting holiday blues can be as simple as being prepared for family conflicts and having a specific plan to handle the uncomfortable emotions that may arise, notes Bernier. Creating a list of “potential issues” and “role playing how you will react with people you trust” can be effective ways to survive difficulties that might occur.

“It is OK to know that you don’t have to be happy during the holidays,” states Bernier, stressing “just accept your feelings and the place where you are at.” If needed, she said, just reach out to your network of family or friends or contact a professional.

According to Bernier, when expectations are unrealistic, we almost always will fail to meet them. Scale back on your plans, or ask for help. Just keep your expectations low and when you visit family or friends, just go and enjoy the social interactions.

If seeing family causes you great amounts of stress each year, it is alright to say no sometimes and celebrate with friends, Bernier recommends. If you don’t want to withdraw altogether from your family gathering because of tension, you don’t have to, she says. Just keep your visit time-limited. She recommends going for an hour or two rather than spending all day there.

The holidays can easily become a source of stress, especially when you’re standing in long lines at the mall waiting to buy the last available iPad while trying to remember how much money you have left to use on your credit cards. Writing out a gift list along with creating a budget for holiday spending can help decrease anxiety, though, Bernier notes. By setting spending limits, you will also reduce the anxiety that comes with reviewing your post-holiday credit card bills.

Maintaining healthy habits can also take the blues out of your holiday, predicts Bernier. Enjoy some eggnog, cheese cake or pastries at a holiday party, but keep the balance by eating healthy foods (smaller portions), drinking alcohol in moderation, continuing to exercise and getting enough rest.

Coping with Holiday Depression Besides family stress, other factors may well play into bringing on the holiday blues.

During this time of the year, some Rhode Islanders may even feel a little depressed or have suicidal thoughts with the approaching upcoming festive holidays, especially if they have lost a spouse or other loved one/friend. Or perhaps they are unemployed, experiencing painful chronic illnesses, or just feel isolated from others.

If this happens, “feeling low with nowhere to turn,” as noted singer songwriter Bill Withers says in a public service announcement, there is a place to call – The Samaritans of Rhode Island – where trained volunteers “are there to listen.” Incorporated in 1977, the Pawtucket-based nonprofit program is dedicated to reducing the occurrence of suicide by befriending the desperate and lonely throughout RI’s 39 cities and towns.

Since its inception, The Samaritans has received more than 500, 000 calls and trained 1, 380 volunteers to answer its confidential and anonymous Hotline/Listening Lines.

With the first Samaritan branch started in England in 1953, chapters can now be found in more than 40 countries around the world. “Samaritans, can I help you?” is quietly spoken into the phone across the world in a multilingual chorus of voices, notes its web site.

Executive Director Denise Panichas, of the Rhode Island branch, notes that the communication-based program teaches volunteers to effectively listen to people who are in crisis. Conversations are free, confidential and, most importantly, anonymous.

A rigorous 21-hour training program teaches volunteers to listen to callers without expressing personal judgments or opinions. Panichas said that the listening techniques called “befriending” call for 90 percent listening and 10 percent talking.

Panichas noted that the Samaritans of Rhode Island’s Listening Line is also a much needed resource for caregivers and older Rhode Islanders.

Other services include a peer-to peer grief Safe Place Support Group for those left behind by suicide as well as community education programs.

In 2011, the Samaritans of Rhode Island received more than 7, 000 calls and hosted more than 50, 000 visitors to its website.

The Samaritans can be the gateway to care or a “compassionate nonjudgmental voice on the other end of the line,” Panichas notes. “It doesn’t matter what your problem is – be it depression, suicidal thoughts, seeking resources for mental health services in the community, being lonely or just needing to talk – our volunteers are there to listen.”

For persons interested in more information, visit the Samaritans website at http://www.samaritansri.org. There is an emergency checklist as well as information by city and town including Blackstone Valley communities from Pawtucket to Woonsocket.

Gallery and Gift Shop Supports the Program and its Services In December 2011, The Samaritans began a social venture by relocating to the city of Pawtucket’s Arts & Entertainment District, and opening the Forget-Me-Not Gallery and Community Education Center. Through partnerships with Rhode Island’s fine arts and crafts community, “we hope to foster hope, inspiration and commemoration of the lives of our loved ones who have fallen victim to suicide,” stated Panichas.

At the Forget-Me-Not gallery, no sales taxes are charged on oneof-a-kind pieces of artwork. The gallery also is a retail site for Rhode Island-based Alex and Ani jewelry and other gift ware.

For those seeking to financially support the programs of the Samaritans of Rhode Island, its Gallery and Education Center is available to rent for special events, meetings and other types of occasions. For information on gallery rental, call the Samaritans business line at 401-721-5220; or go to http://www.samaritansri.org.

Need to Talk? Call a volunteer at the Samaritans – 401-272-4044 or toll free in RI (1-800) 365-4044.