A journalist and former caregiver discusses available services and the challenges of proper care with a local Alzheimer's Association expert

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When we learned my father-in-law was diagnosed with Alzheimer’s disease, family members found themselves seeking answers for mounting questions in hopes that the answers would assist them with next steps regarding his care. 

Prior to my move to Aztec, my home was Dallas, Texas, where along with a successful career, I had decided to become a caregiver for a dear friend of mine in her 70s. Mary was also afflicted with this life-changing disease and with no one to care for her. So when we received the news about my father-in-law, I was ready. I shared my experience as a caregiver for Mary to help prepare the family for what was to come.

As emcee’s for the Walk to End Alzheimer’s, an event held by the Alzheimer’s Farmington’s Regional Office, my husband Leonard and I have dedicated our time to help increase awareness, outreach, and raise funds for Alzheimer’s research. However, as a caregiver, there is still much to learn.

I decided to talk to an expert to provide answers to basic questions and what to expect when they hear the words, “he/she has Alzheimer’s.” I interviewed northwest regional manager Waldon Lynch from the Alzheimer’s Association, New Mexico Chapter in Farmington.

Neil:Many confuse Alzheimer’s with dementia and dementia with Alzheimer’s. What can you tell us about each?

Lynch: That’s a question we get a lot. There seems to be a lot of misinformation out there. Basically, dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Dementia is not a specific disease. It's an overall term that describes a wide range of symptoms. Alzheimer’s, the most common type of dementia, is a fatal brain disease and accounts for 60 to 80 percent of dementia cases.

Alzheimer's is a progressive disease, where dementia symptoms gradually worsen over a number of years. In its early stages, memory loss is mild. As Alzheimer's advances through the brain it leads to increasingly severe symptoms, including disorientation, mood and behavior changes; deepening confusion about events, time and place; unfounded suspicions about family, friends and professional caregivers; more serious memory loss and behavior changes; and difficulty speaking, swallowing and walking. 

Neil:What percentage of New Mexicans have Alzheimer’s? What is the average age to be diagnosed with the disease?

Lynch: Currently, there are 39,000 New Mexicans living with Alzheimer’s, and that number is expected to increase to 53,000 by 2025, so Alzheimer’s is certainly on the rise in our state.  It should also be noted that these people are being cared for by 107,000 family and friends — “unpaid family caregivers” who provide $1.538 billion total value of unpaid care in our state alone.

If you go by percentages, the number of New Mexico’s population living with Alzheimer’s is 13.2 percent as of 2017, but expected to increase to 39.5 percent by 2025. Between 2017 and 2025, every state across the country is expected to experience an increase of at least 14 percent due to increases in the population age 65 and older. New Mexico’s percentage is, unfortunately, higher than the national average.

So you can see why we consider this a looming public health crisis, particularly when you consider the aging baby boomers population. The majority of people diagnosed with Alzheimer's are 65 and older. But Alzheimer's is not just a disease of old age. Approximately 200,000 Americans under the age of 65 have younger-onset Alzheimer’s disease. 

Neil:I read that the Alzheimer’s Association and the medical community have celebrated successful studies recently to help with moving those afflicted with Alzheimer’s to become more lucid. Can you elaborate?

Lynch: It’s important to note that — as of today — Alzheimer's has no cure or prevention, and the treatments currently available are only for symptoms. But although current Alzheimer's treatments cannot stop the disease from progressing, they can temporarily slow the worsening of dementia symptoms and improve quality of life for those with Alzheimer's and their caregivers. Today, there is a worldwide effort under way to find better ways to treat the disease, delay its onset, and prevent it from developing, but we haven’t found it yet.

It seems that there is a new wonder drug in the news every couple of months. And though we are encouraged by all the promising research going on, it’s our position to remain cautious until the clinical trials phase is complete. Ultimately, the path to effective new treatments for dementia is through increased research funding and increased participation in clinical studies. Right now, volunteers are urgently needed to participate in more than 180-plus actively enrolling clinical studies and trials concerning Alzheimer's and related dementias. You can find out more about clinical trials and how to participate at alz.org/TrialMatch. 

Neil: If you could offer advice to a first-time caregiver, what would be the one thing you would tell them?

Lynch: There is no tougher job than dementia caregiver, it’s typically 24/7 and it can easily become overwhelming. So there are actually a few things we like to impress upon new caregivers: 

♦ Educate yourself.

It’s important to understand the disease, so you know what to expect.  As the disease progresses, new caregiving skills may be necessary. The Alzheimer's Association offers programs to help you better understand and cope with the behaviors and personality changes that often accompany Alzheimer's. You may also find it helpful to talk to other care partners and caregivers about how they are coping with the challenges of the disease and uncertainty about the future.

♦ Join a support group

Support groups provide a forum to share feelings, concerns, information, and as a way of supporting and encouraging each other. There is no cost for attending and no commitment to come back.

♦ Take care of yourself.

Visit your doctor regularly. Try to eat well, exercise and get plenty of rest. Making sure that you are healthy can help you be a better caregiver.

♦ Make legal and financial plans.

Putting legal and financial plans in place after an Alzheimer’s diagnosis is important so that the person with the disease can participate. Having future plans in place can provide comfort to the entire family. Many documents can be prepared without the help of an attorney. However, if you are unsure about how to complete legal documents or make financial plans, you may want to seek assistance from an attorney specializing in elder law, a financial adviser who is familiar with elder or long-term care planning.

Neil: I learned there are more than 16 million Americans who provide unpaid care for people living with Alzheimer’s. Just recently the president signed into law, RAISE (Recognize, Assist, Include, Support, and Engage), a Family Caregivers Act to provide much needed support to family caregivers. What can you tell us about RAISE and are how can a family take advantage of the support services available?

Lynch: The passing of RAISE is a huge victory for these caregivers you mentioned, who regularly experience stress and depression due to their demanding roles — as well as emotional, physical and financial costs. The new law directs the Department of Health and Human Services (HHS) to develop a national strategy to provide education and training, long-term services and supports, and financial stability and security for caregivers. This will enhance assistance for family caregivers and result in improved caregiver health and well-being and ultimately result in a higher quality of care for their loved ones. However, that strategy still needs to be developed and implemented before we can direct caregivers toward any specific service or outlet. In the meantime, caregivers can stay tuned to the Alzheimer’s Association’s website and social media for RAISE news as it becomes available. The association will continue to play an active role in the process as HHS works to develop and implement the national strategy.

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Neil:It has been said that a caregiver’s stress level spikes while caring for a loved one afflicted by Alzheimer’s. What can you tell us about that and what can they do to help curb their fear and anxiety? 

Lynch: Let’s face it, it can be overwhelming to take care of a loved one with Alzheimer's or other dementia, and Alzheimer's caregivers frequently report experiencing high levels of stress. It’s important to remember that too much stress can be harmful to both of you.  As a caregiver, the best thing you can do to combat stress is to be mindful of the symptoms, so that you’ll recognize them when they occur. Here are some common symptoms of caregiver stress:

1. Denial about the disease and its effect on the person who has been diagnosed.

“I know Mom is going to get better.”

2. Anger at the person with Alzheimer’s or frustration that he or she can’t do the things they used to be able to do. 

“He knows how to get dressed — he’s just being stubborn.”

3. Social withdrawal from friends and activities that used to make you feel good.

“I don’t care about visiting with the neighbors anymore.”

4. Anxiety about the future and facing another day. 

“What happens when he needs more care than I can provide?”

5. Depression that breaks your spirit and affects your ability to cope. 

“I just don't care anymore.”

6. Exhaustion that makes it nearly impossible to complete necessary daily tasks.

“I'm too tired for this.”

There are a few different suggestions for managing stress.  They all involve reaching out.  Caregivers often feel isolated — but to get help, you have overcome that feeling and make the first move.

No. 1 is, if you experience signs of stress on a regular basis, consult your doctor.  Ignoring symptoms can cause your physical and mental health to decline.

• Know what community resources are available. 

Adult day programs, in-home assistance, visiting nurses and meal delivery are just some of the services that can help you manage daily tasks.  Feel free to contact your local Alzheimer's Association chapter for assistance in finding Alzheimer's care resources in your community.

• Get help and find support. 

Our 24/7 helpline 1 (800) 272-3900 can not only help you deal with that singular moment of anxiety, we can also inform you about local support groups and education opportunities that are all good sources for finding comfort and reassurance. But again, if stress becomes overwhelming, seek professional help.

• Finally, keep in mind that taking a break is important.  

Watch your own health and get plenty of rest. We actually have a Respite Reimbursement Program that helps caregivers get reimbursed for up to $500 a year to have someone watch their loved one while they rest or take a break. 

Neil: Your office is located in Farmington. In terms of your reach to offer families assistance, what geographical area does that include so that others know how to volunteer, how to participate in the walk to raise funds for Alzheimer’s research, how to access brochures and information, and how to become involved?

Lynch: The Alzheimer’s Association, New Mexico chapter, has five offices across our state. The one in Farmington covers the Northwestern Region (Shiprock east to Dulce; south to Grants and Pine Hill; west to Zuni: then north to Gallup and back to Shiprock). You can call us at 1 (800) 272-3900 or visit alz.org/newmexico to find out about presentations, caregiver education and support groups near you. We can also arrange care consultations by phone, and we’ve recently established a call-in support group for those who might have trouble traveling (second Friday of each month, noon–1 p.m., via conference 701-801-1220, Meeting ID# 632.894.549). By the way, all those services, including our six-week Skills for Dementia Caregiving course, are free!

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We are a volunteer-driven organization, and so volunteering is key to our success. We love our volunteers, and we couldn’t do any of this without the great people who lend us their time and talents. Our volunteers are passionate, inspired and want to make a difference in the fight against Alzheimer's disease — whether it’s as a Skills for Dementia Caregiving instructor, support group facilitator, event committee member, administrative help or in some other way. If you are interested, we can absolutely find the right fit for your interest and skills. There’s so many ways to get involved!

Our Northwestern Regional Walk to End Alzheimer’s is coming up on Sept. 29 at Berg Park. Planning and fundraising is already underway. You can call us to register or volunteer. If you just want to sign-up, visit http://act.alz.org/FarmWalk18. We can always use volunteers for our walks and walk committee. 

For free brochures on a wide range of disease-related topics, information on local services and resources or simply to learn more about volunteering, visit the Farmington office, located at 3300 North Butler Ave., suite 221. Brochures are also available at the Aztec and Farmington chambers of commerce. I encourage anyone interested in anything we’ve discussed here to drop by or call for an appointment.

Waldon Lynch can also be reached via email at wllynch@alz.org. For more specific scientific information on Alzheimer’s disease, please visit their website at alz.org or call the 24/7 Helpline at 1 (800) 272-3900.

Vangie Neil of Aztec is a journalist, writer and author. She can be reached via email at santafewriter@att.net.

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