Caring for someone with dementia? There’s free help available in North Texas

Living with dementia is a scary, but real possibility for many aging people. It affects approximately one in 10 Americans 65 and older and nearly one in three 85 and above.

Sadly, as the dementia grows stronger, it absorbs more and more of the memory and life of the person who has it. However, it also gets a stronger grip on the life of the person providing care, which is often a family member or someone close — and in most cases in a home instead of a nursing facility.

No one knows more about this challenge than Doni Green, the North Central Texas Council of Governments director of aging programs. After working with aging adults for more than two decades, the reality of what it’s really like to deal with dementia was brought home when she began helping to care for her father.

Like most caregivers, she loved her dad and wanted to do all she could to make his life comfortable. She found out, as have most, that what the heart wants done isn’t always possible alone.

“I could no longer reason in the same way or convince him that there were no strangers in his home who wished him harm,” Green said. “I had to learn new ways to communicate in order to reassure him he was OK and redirect him when necessary.

”My father had far too many blows to the head from years of playing football and developed dementia when he was in his early 80s. Dementia eventually took his life.”

And even though she’d seen plenty of what dementia can do in her career, she said it was devastating to watch him regress until he eventually passed away.

Now, Green is part of a new no-charge program to qualifying applicants, Dementia Friendly North Central/East Texas. It is available to people with memory loss and their family caregivers and is designed to help them navigate through what is likely the most challenging time of their life.

The program’s services for people with memory loss include:

• Short-term housekeeping and personal care.
• Medical equipment and supplies not covered by insurance.
• Minor repairs that make the home more accessible.

Services for caregivers include:

• Classes to understand dementia, experience dementia, use touch to communicate and calm someone with dementia.
• One-on-one consultation to handle “problem” behaviors such as wandering, anger and delusions.
• Respite care, short-term relief for caregivers.

All of the services through Dementia Friendly North Central/East Texas are funded by the Older Americans Act and made available at no cost to those who qualify. They do not bill insurance.

The program was a collaborative effort between several nonprofit agencies, under the leadership of the late Don Smith, the former leader of the Tarrant Area Agency on Aging, Green said.

”He’d participated in a couple of federal grants to expand services for Tarrant County residents with dementia and their family caregivers. I agreed to apply for the same grant that would expand the work beyond Tarrant County,” Green said. “It was a highly competitive process, as only 10 applicants were selected nationwide, and I was thrilled that we were selected for funding.”

In addition to services for people with dementia and their caregivers, Dementia Friendly North Central/East Texas provides training to professionals, including health care providers and police officers, to help them understand dementia and respond more effectively to people with memory loss.

Progressive and incurable

Dementia is a progressive, incurable disease that affects mental and physical function and eventually results in death. Although people with dementia have good days and bad days, the trajectory is downward. For this reason, it can be a devastating diagnosis for the person with dementia and their family caregivers.

Green said only about half of people with dementia are diagnosed, and only half of those who are diagnosed are informed of that diagnosis.

”Nearly all people with dementia know that something is wrong, but don’t always know what is causing their changes in memory and function,” Green said. “Many doctors are reluctant to notify their patients of the diagnosis because they have few treatments — at least in terms of drugs.

”However, there are a lot of non-drug treatments that can benefit people with dementia and their family caregivers. For example, families can modify environments to remove challenges and identify causes of ‘problem’ behaviors.”

Also, Green said a lot of people confuse dementia and Alzheimer’s. Dementia is a general term for a condition that results in problems with thinking, remembering, or making decisions regarding daily life. Alzheimer’s is the most common type of dementia, accounting for approximately 60% of all cases.

Caring for caregivers

While nursing facilities are always an option, Green stressed that it is better for folks with dementia to continue to live at home.

”Home is where most of us want to be. It’s where we can be most independent and enjoy familiar surroundings,” she said. “Moves are disruptive under the best of circumstances and particularly difficult for someone with memory loss.”

Also, in-home care is often the most cost-effective option, she added.

With that, however, family caregivers confront a host of challenges. These include understanding behavior changes, balancing caregiving responsibilities with other family and personal needs, determining what help is available, and figuring out how to pay for care.

“It has helped me a lot,” said Irene Palacios, a caregiver in the program. “I didn’t have a clue how to seek help for my husband. Just talking to someone is very helpful in the most difficult times.”

Green said too often caregivers neglect their own emotional needs, with nearly two-thirds of dementia caregivers experiencing depression. Respite is a valuable service that allows the family member to recharge his/her batteries.

Green added that knowledge is power. She encourages learning all you can about the condition and how you can better manage it, which can be done through Dementia Friendly North Central/East Texas.

”We’re excited to support several training programs, including Dementia Live (which lets people simulate dementia), Compassionate Touch, and REACH (which provides one-on-one education and support),” she said.

Green said people of all ages can benefit from the training.

”At the most basic level they can learn why someone with dementia may act in uncharacteristic ways and how to respond with caring,” she said.

And while dementia does often occur with aging, it is not a normal part of aging. She said there are a lot of treatable conditions, such as drug interactions, depression and nutritional deficiencies that can be confused with dementia.

“It’s important to be evaluated by a doctor if memory changes. If the diagnosis is dementia, avail yourself of the free services that are available through agencies such as the Area Agencies on Aging and Alzheimer’s Association,” she said.

For more information

For more information about Dementia Friendly, visit nctcog.org/aging-services/dementia-friendly or call 1-800-272-3921.