Help Those With Dementia in a Disaster

The 2017 Atlantic hurricane season has been hyperactive, featuring five major hurricanes so far. In late August, Hurricane Harvey became the first major hurricane to make landfall in the United States since 2005. In early September, Hurricane Irma became the first Category 5 hurricane to impact the northern Leeward Islands on record, as well as equaling the strongest hurricane ever to make landfall in the Atlantic basin. While natural disasters can affect all of us in terrible ways, they can be especially problematic to elderly ones and those with dementia. For example, ten nursing home residents died from extreme heat in Florida after Hurricane Irma knocked out the power and A/C at the nursing home. In another case, nursing home residents were trapped in Texas when the nursing home became flooded for hours before authorities rescued them.

Nursing home residents trapped in waist-deep water in Texas were later saved by authorities

These disaster situations (including hurricanes, tornadoes, heat waves, forest fires, and blizzards) can be especially confusing and upsetting to elderly ones with dementia. However, there are steps that you can take to assist your elderly loved ones with dementia in case of a disaster.

Plan Ahead

Prepare mentally that disasters happen and you are potentially at risk. Learn about disasters that can happen in your area and make an emergency plan. Make sure your emergency plan accommodates your loved one’s specific needs, such as an oxygen tank or walker. If your elder loved one lives in a residential facility, learn about its disaster/evacuation plans. Find out who is responsible for evacuating the person in the event of an emergency. Have the contact information for your friends and relatives. If your elderly loved one receives routine health procedures at a clinic or with home health, learn who the back-up service providers are and obtain their contact information. Purchase extra medication to have a supply on hand. Download Medicare’s Getting Care and Drugs in a Disaster Area. It explains how Medicare beneficiaries have special rights to get out-of-network care if they live in an area where the President has declared a disaster. Consider enrolling your elder loved one in a safety program. The Alzheimer’s Association offers MedicAlert® + Alzheimer’s Association Safe Return®, designed to assist in the return of those who get separated from their caregivers. It’s important to have access to health records, especially in the case of an emergency. There are now many options for storing personal health records, including online services that make it possible to access records from anywhere in the world. Regardless of how you choose to store personal health information, make sure there are people other than the primary caregiver who have access to or copies of the person with dementia’s medical history, medications, physician information and family contacts.

Prepare an Emergency Kit

Put together an emergency kit in a watertight container, and store it in an easily accessible location. Power, water, phone, and transportation services can fail. If you own a car, try to keep the fuel tank at least half full, and always have food, water, and emergency supplies in your home.​ These are the types of supplies you may want to have:

  • Copies of important papers such as legal papers, list of medication and dosages, insurance information, Social Security cards, and copies of prescriptions
  • Several sets of extra clothing
  • Supplies of medication
  • Incontinence products
  • Identification items
  • Extra pair of eyeglasses
  • Recent picture of the person with dementia
  • Physician’s name, address, and phone number
  • Bottled water
  • Flashlight and radio with extra batteries
  • Favorite foods or items
  • Blankets
  • Sturdy shoes
  • First-aid kit

During an Evacuation

For a person with Alzheimer’s, changes in routine, traveling, and new environments can increase the risk for wandering and agitation. Stay alert to unexpected reactions that may result from these changes. When appropriate, share the diagnosis with others, such as hotel or shelter staff, family members, or airline attendants, so they can better assist you. Try to stay together. Do not leave the person with dementia alone. Do your best to remain calm, as this can engender a positive tone.

Following these tips and being prepared can help you and your loved ones deal with an emergency situation in the best way possible.


Long-Term Care Costs Rising


Long-term care costs are rising and don’t show any signs of slowing down. Private nursing home care (the most expensive option) currently costs more than $97,000 annually. It may soon exceed $100,000 per year.

Unfortunately, many people do not plan for or understand these types of expenses until they are faced with them. People avoid thinking and talking about long-term care, which results in little planning or saving for the future. A 2016 survey by Associated Press-NORC Center for Public Affairs reveals that a third of Americans 40 and older have done no planning for their long-term care needs.

Long-term care costs are huge financial burdens on individuals and families. Private health insurance and Medicare offer only limited help. People who do not have private long term care coverage must pay for nursing home care out-of-pocket.  Without proper planning, this can lead to a depletion of assets. 

The cost of care, including adult day care and assisted living communities, has risen an average of 4.5% this year, according to a recent survey by Genworth Financial. This is the second highest increase since Genworth began these surveys in 2004. The cost of home health aide services rose the most, up 6% from last year. Coverage costs are rising as well and initial premiums for long-term care can cost well over $2,000 annually, depending on the customer’s age, according to the Bipartisan Policy Center.

The Genworth Financial survey concludes that these rising costs may be due in part to growing labor expenses and sicker patients. Care providers had to raise pay to comply with state requirements for minimum wages. Also, many have started providing health insurance to their employees to comply with the Affordable Care Act. Genworth researchers say costs are rising and will continue rising because patients today have more complex medical needs yet live longer than they did ten years ago.

Although long-term care costs are rising, much of the financial burden can be alleviated by planning and thinking ahead. Careful planning can protect much of your assets. Call our office to discuss asset protection and Medicaid planning with one of our experienced attorneys.


Alleviating Workplace Woes for Cancer Patients

We often encounter clients who are struggling with work issues during cancer treatment. Consider the mother who must hold on to her job in order to keep health insurance for herself and her family. Many people have no idea what they are required to tell their employer or what they should share with coworkers. Clients also need answers about how they can use Family and Medical Leave Act (FMLA) benefits.

Likewise, local employers need dependable information about how to best support employees who have cancer without jeopardizing the success of their business.

Fortunately, the client advocates at Cancer Services of Northeast Indiana have specialized training in this area and readily offer their knowledge and guidance to both employees and employers before, during and after treatment.

If you are an employee, advocates can help:

  • Explain FMLA and other benefits. Employees may be unsure of the best way to share their diagnosis at the workplace, or even if they must disclose it to their employer. They may need direction on how and when to apply for FMLA, Short or Long-term Disability, or Social Security Disability benefits. We can provide that direction as well as help people understand the differences between these programs.
  • Facilitate open communication with an employer. Conversations with an employer can lead to better results for the employee such as a reduced work schedule during treatment weeks. Employees may also benefit from a flex-schedule or telecommuting to better accommodate work demands and treatment schedules.
  • Provide reasonable solutions. A quieter environment might help an employee who is struggling with chemo-fog. Employees undergoing or recovering from treatment may also need an increased number of bathroom breaks, or more opportunities to sit because of neuropathy in their feet.

If you are an employer, client advocates can help:

  • Balance the needs of the employee with the needs of the business. We can help employers who are seeking the best way to balance the legal rights of their employees with the needs of the business. Human Resource managers might be unsure of how to navigate the concern of other employees who might perceive an employee with cancer as receiving “favoritism.” They also may be worried about the cost of providing an employee with “reasonable accommodations.”
  • Prepare a strategy. Cancer Services can help businesses that currently do not have any employees with cancer, but would like a plan in place should the need present itself. Advocates can assist in providing education and support, developing a plan for working during treatment, and providing outside resources and referrals to both employees and employers to navigate through all of these concerns.

We know that employment and careers are vital aspects of the quality of life and we are here to help. For more information, visit or give us a call at 260-484-9560.

Liz Karst - cropped
Liz Karst
Written by: Liz Karst, Client Advocate for Cancer Services of Northeast Indiana

Caregiver Symposium on November 3


On November 3, the Alzheimer’s Association will be hosting the Fall Caregiver Symposium in Fort Wayne (the same symposium will also be held in Merrillville on November 2). These symposiums are designed to educate both family and professional caregivers who would like to enhance their knowledge of Alzheimer’s and their caregiving skills. The event will be held at the following time and location:

Friday, November 3, 2017
Holiday Inn IPFW
4111 Paul Shaffer Drive
Fort Wayne, IN 46825

The keynote speakers for this conference will be Deborah Shouse and Ron Zoglin. They are dementia advocates and former caregivers. Through sharing their message of finding hope and creativity through the dementia journey, Deborah and Ron have connected with care partners from around the world. They have performed internationally and across the U.S. at dementia symposiums, caregiver conferences, and spiritual centers. Deborah’s latest book Connecting in the Land of Dementia: Creative Activities to Explore Together contains dozens of interviews of innovators worldwide and features hundreds of meaningful ways to stay connected and engaged. You will have the opportunity to purchase this book at the symposium.

The schedule will be as follows:

8:15-9:00                Conference check-in and Exhibit Hall opening

9:00-9:10                Welcome

9:10-10:40              “Connecting in the Land of Dementia” – Deborah Shouse and Ron Zoglin

10:40-11:00            Break

11:00-12:00            Regional expert – Marcia Krach, RD on eating and nutrition issues

12:00-1:00              Lunch

1:00-1:45                 “Love in the Land of Dementia” – Deborah Shouse and Ron Zoglin

1:45-2:30                 “Caregiver Roles and Reactions” – Alzheimer’s Association Staff

For social workers and health care facility administrators, 3.5 CEUs are available for attending the entire conference. For other professionals, a certificate of attendance will be available. Those seeking CEU credit must bring their license number to the conference. Certificates will be handed out at the conclusion of the conference. Professionals must attend the entire conference in order to receive CEUs or a certificate.

Advance registration is required for this event and may be done so online or by calling the 24/7 line at 1-800-272-3900. Registration will close on October 29 and no registrations will be accepted after October 29. There is a $40 registration fee for family members and a $70 registration fee for professionals. Lunch, break service, and handouts are all included.

Senate Approves Increase for Alzheimer’s Research Funding

The Senate Appropriations Committee has approved a $414 million increase for Alzheimer’s and dementia research for the fiscal year 2018 budget.  Similar action has been taken by the House Appropriations Committee and Alzheimer’s advocates are hopeful that Congress will pass this increase into law in the coming months. If signed into law, federal investment in Alzheimer’s and related dementia research funding would reach $1.8 billion. The Senate committee described Alzheimer’s as “the most expensive disease in America.’’ The nation spends nearly $260 billion a year caring for people with Alzheimer’s and other forms of dementia, with Medicare and Medicaid accounting for two-thirds of that amount.

The Alzheimer’s Association, Alzheimer’s Impact Movement (AIM), and its supporters have been advocating for a $414 million increase since the start of the 115th Congress. Leading experts say that a greater investment is still needed in order to meet the goal of the National Plan to Address Alzheimer’s Disease – preventing and treating Alzheimer’s by 2025.

“We applaud this bipartisan effort, and hope to see continued collaboration on behalf of the more than 5 million Americans living with Alzheimer’s and their over 15 million caregivers who are depending on their representatives to prioritize their health,” said Harry Johns, President and CEO of Alzheimer’s Association and AIM.

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. Their mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. The Alzheimer’s Impact Movement (AIM) is a nonpartisan, nonprofit advocacy organization working in strategic partnership with the Alzheimer’s Association. AIM advocates for policies to overcome Alzheimer’s disease, including increased investment in research, improved care and support, and development of approaches to reduce the risk of developing dementia.


Walk to End Alzheimer’s 2017


It is the sixth leading cause of death in America.

One in three seniors die from this disease.

More than 5 million Americans are living with it.

What disease is it? Alzheimer’s.

Alzheimer’s is a progressive disease that destroys memory and other important mental functions. It’s the only cause of death in the top 10 in the United States that cannot be prevented, cured, or slowed. Someone in America develops Alzheimer’s every 66 seconds. Not only are those with Alzheimer’s affected but also their families, friends, and caregivers are affected. There are more than 15.9 million caregivers for those with Alzheimer’s or other dementias in the United States. In 2015, those 15.9 million caregivers provided an estimated 18.1 billion hours of unpaid care valued at $221.3 billion. Alzheimer’s will cost the United States $236 billion.

What can be done about Alzheimer’s? The Alzheimer’s Association endeavors to raise awareness and funds for Alzheimer’s care, support, and research through the Walk to End Alzheimer’s event. This event is the largest like it in the world. It calls on participants of all ages and abilities to unite in ending Alzheimer’s. Our local Fort Wayne Walk to End Alzheimer’s will be held at Parkview Field on October 7, 2017. There is no fee to register but fundraising is encouraged in order to contribute to the cause and raise awareness. The Alzheimer’s Association provides free, easy-to-use tools and staff support to help participants reach their fundraising goal.

Do you want to help end Alzheimer’s? Join our fundraising team. The Walk will be held at Parkview Field, 1301 Ewing St., Fort Wayne, IN 46802 on Saturday, October 7, 2017. Registration begins at 10:00 a.m. and the ceremony at 11:30 a.m. with the Walk immediately after. If you can’t make it to the Walk, you can donate to our team in support of Alzheimer’s. Your funds will be used to further the care, support and research efforts of the Alzheimer’s Association. Thank you for your support to end Alzheimer’s.

Fight the Stigma of Alzheimer’s


Facing stigma is often a worry of those with Alzheimer’s and their caregivers. People report being misunderstood, or even mistreated, due to the myths and misconceptions surrounding Alzheimer’s. Stigma is using negative words and/or actions to disgrace a person because of a disability or illness. It may arise around Alzheimer’s because the lack of public awareness and/or the lack of knowledge about the disease. Stigma has a negative effect on those with Alzheimer’s because it may prevent them from seeking medical treatment, receiving a diagnosis, living the best quality of life possible, making plans for the future, benefiting from treatments, creating a support system, and participating in clinical studies. Stigma also impacts the research for Alzheimer’s. The government funds research for Alzheimer’s disease at lower rates than other diseases, even though the cost of caring for Alzheimer’s is significantly higher.

Stigma and stereotypes are a significant obstacle to well-being and quality of life for those with Alzheimer’s. Family members may not want to talk about the disease or may perceive that the person with Alzheimer’s has little to no quality of life. The relative may even avoid interacting with that person. Friends could begin withdrawing from the person’s life, leaving them feeling abandoned or isolated. Rather than asking the Alzheimer’s patient directly how they are doing, people may ask the caregiver instead. These reactions can lower the quality of a person’s life and even discourage them from seeking treatment.

Clearly, the stigma associated with Alzheimer’s has a negative impact on those living with the disease, their caregivers, their family, and their friends. What can be done to erase some of this stigma? Consider 5 ways:

  1. Be open and direct about Alzheimer’s. Do not be afraid to talk about the disease and the need for prevention and better treatment.
  2. Communicate the facts to dispel the myths. Share information about the disease so your loved ones and others can be accurately informed.
  3. Seek support and stay connected. Develop a network of support with family, friends, and others to maintain meaningful relationships and activities.
  4. Do not be discouraged. Rather than becoming discouraged by others’ misconceptions, view it as an opportunity to teach them.
  5. Take part in the solution. Have an active voice in raising awareness and advocating for Alzheimer’s research.

Helping a Senior Loved One From a Different State

from out of state

Having a senior loved one who lives far away can be stressful at times, in part because you may want to be of more help to them when they have health issues or needs that you can’t provide for from a distance. For many people, assisting a senior loved one from afar is all about using technology to their advantage and staying in contact as much as possible, as well as helping their loved one find support in their community to keep loneliness at bay and to ensure they have support.

Because there is no one way to be a caregiver, it’s important to remember that as long as you’re doing what is within your power to help your loved one stay safe and healthy, you have every reason to keep the title. Family dynamics and financial situations may change, making this a stressful time for you, so make it a point to take care of yourself so that you may better care for your loved one.

Here are some things you can do to make it easier.

Let technology be your friend

If your loved one is open to it and doesn’t already have one, help him find a smartphone that meets his needs. It may be handy to have a large screen for better viewing, plus lots of storage space for handy apps like Medisafe, which will assist with keeping track of medicines, or games like Words With Friends, which will keep his mind active and vital.

Help him downsize

Downsizing is a huge benefit for many seniors, especially if they have lived in a larger-than-needed home for many years. Making a move later in life can seem daunting to many, but it means not having to clean or take care of an enormous house while also dealing with health or mobility issues. Help your loved one downsize by looking for a home that fits their needs–location, size, and price are the three most important details to look at–and then creating a checklist of things that need to be done. Hire a helper or ask one of your loved one’s friends to come and help declutter and clean, going room-by-room to ensure nothing gets left out. In the end, downsizing can help a senior stay safe and healthy for years to come.

You can find more tips on downsizing here.

Help him stay social

Staying social means much more than just a way to pass the hours; it’s also extremely helpful in combating loneliness, keeping the brain active and vital, and finding support in our peers. For seniors, all these things are important parts of having a healthy life after retirement. Help your loved one get social by looking for ways he can meet new people; perhaps with an exercise group, or a book club at the local library.

Get organized

Taking over the role of caregiver can be stressful if you aren’t prepared for any contingency. Think about the best ways to help your loved one should an emergency occur, and gather any paperwork you might need. Make copies so your loved one can be involved in any decision-making, and communicate with family members about any important events in your loved one’s life.

Ensuring your senior loved one is well taken care of is a big job, so it’s important to ask for help when you need it to avoid becoming overwhelmed. If no one is available to assist you, reach out for support from a counselor or therapist who can help you manage your feelings. For more tips on how to handle helping a loved one, read on here.

Written by Marie Villeza of ElderImpact

New Report Says One-Third of Dementia Cases Could Be Prevented


As of 2017, close to 50 million people across the globe live with Alzheimer’s or another form of dementia. This number is expected to almost triple by 2050, climbing to an estimated 132 million people. However, a new report recently stated that one-third of dementia cases could be prevented through better management of lifestyle factors. The new study was published in The Lancet and conducted by the first Lancet Commission on Dementia Prevention and Care. It brought together 24 international experts to review existing dementia research and provide recommendations for treating and preventing the devastating condition.

Currently, there is no drug treatment to prevent or cure dementia. This study highlights the impact of non-drug treatments and identifies nine lifestyle factors that affect the likelihood of developing dementia. The analysis found that about 35% of dementia cases are attributable to the following lifestyle factors:

  1. Not getting an education or staying in school over the age of 15
  2. High blood pressure, obesity, and diabetes
  3. Hearing loss in mid-life
  4. Smoking
  5. Not getting physical exercise
  6. Depression and social isolation

Theoretically, then, modifying these lifestyle choices and behavior could prevent one-third of dementia cases. There has been a great deal of focus on developing medication to prevent dementia. However, there are major advantages to considering lifestyle changes as a preventable approach to dementia. For example, if scientists were able to find a way to target the major genetic risk factor, this would only prevent 7% of cases. In contrast, making lifestyle changes could potentially prevent 35% of cases. Researchers identified the following as the most common factors to focus on for dementia prevention:

  1. Education. Increasing education in early life could reduce the total number of dementia cases by 8% if all people worldwide continued their education until over the age of 15. Not completing secondary education could raise dementia risk by reducing what’s referred to as “cognitive reserve.” It’s believed that education and other mentally stimulating tasks help the brain strengthen its networks so it can continue to function at a higher level even if it starts to decline later in life.
  2. Hearing loss. Reducing hearing loss in mid-life could reduce the total number of dementia cases by 9% if all people worldwide were treated. Research on the link between hearing loss and dementia is still in its early stages. It may be that the social isolation and depression caused by hearing loss is the actual link to dementia.
  3. Smoking. If all people worldwide stopped smoking, this could reduce the total number of dementia cases by 5%. The study noted that it’s particularly important to stop smoking later in life to reduce neurotoxins and improve heart health, which in turn improves brain health.

The report aimed to offer guidance on ways to reduce the risk of dementia throughout life and improve the care for those living with dementia. Lifestyle modifications will not delay or prevent all cases of dementia, but the researchers hope that this study will shift the focus to more concrete ways to prevent dementia.

Source: CBS News

Free and Low-Cost Resources For Those With Dementia


Dementia is a decline in mental function that is severe enough to interfere with a person’s everyday life. The emotional and mental effects can be devastating and stressful. Add the financial strain of long-term care, medications, therapy, and appointments, and you could feel completely overwhelmed. Thankfully, several organizations offer free and low-cost resources to those suffering from dementia:

  • Free Screenings: The Alzheimer’s Foundation of America provides free, confidential memory screenings administered by qualified professionals. For Indiana, the site is located at the Franklin United Methodist Community, 1070 W. Jefferson Street, Franklin, IN 46131. Screenings are held by appointment by calling 317-736-7185. You can find more free screening sites in other states here.
  • Resources (Alzheimer’s or Dementia): The Alzheimer’s Association provides free resources for those diagnosed with Alzheimer’s (or another form of dementia) such as articles, videos, workbooks, telephone helpline, local and online support groups, and free education courses. You can also search for additional low-cost and free programs and services available in your area, including support groups and educational workshops.
  • Resources (Caregiver): The Alzheimer’s Association also provides free information and resources for those acting as caregiver for someone with dementia. You can search for local and online support groups and message boards to connect with those dealing with the same type of issues. You can also find resources for different care options to assist you in your caregiving. Administration on Aging offers a free eldercare locator to help you find programs in your area. The National Institute on Aging contains resources for relieving stress and anxiety.
  • Financial AidPaying for Senior Care helps individuals in planning and implementing long-term care. It helps families and caregivers locate public and private programs available to assist in covering the cost of long-term care. Paying for Senior Care has a section to help you find your local Area Agency on Aging, which provides a collection of services via government funding such as insurance counseling, transportation assistance, and caregiver support. The Alzheimer’s Association also describes a number of financial aid options available, including government programs and retirement benefits. It also offers advice on legal and financial planning for those in the early stages of dementia.

While there is currently no cure for dementia, these free and low-cost resources can help families and individuals deal successfully with the challenges of dementia.