Resources for National Family Caregiver Month

This article was provided by MINES affiliate Dementia Coach and Trainer JJ Jordan

November is National Family Caregiver Month and this year, I am dedicating this space to family members who care for loved ones with Alzheimer’s disease and related dementias. I like the term “care partners” when referring to family members who provide this valuable unpaid care. I use the term caregiver for those dedicated professionals who care for our loved ones on our behalf when we are no longer able to administer the care they need.

Some of you may know me as I have been providing individual client dementia coaching and group client dementia Lunch and Learns for the past ten years for Mines and Associates. Helping our clients learn about dementia caregiving and the latest breakthroughs on the topic of Alzheimer’s and dementia is my passion.

Having been a family care partner myself for sixteen years, I am always willing to share my experience to help others understand dementia, get organized, make a long-term plan, and embrace the importance of self-care and respite for themselves. The client Lunch and Learn I deliver, titled Alzheimer’s/Dementia 101 – Facts, Research, Treatment, Care, and Risk Reduction is a great way to ensure that workplace groups understand the topic, including warning signs, risk factors, and risk reducers. You may be surprised to know that two out of three of us will perform some caregiving duties in our lifetime for a family member or friend with dementia.

In my case, three of our four parents in my immediate family were diagnosed with Alzheimer’s within a year and a half of each other. They lived for 16, 14, and 11 years with the disease. To say it changed everything about our family would be a vast understatement. I was in corporate America at the time and never imagined that my life would change so dramatically due to my parents’ health issues. With three of them to care for, I realized that I needed more knowledge, so I reinvented myself in the field of dementia.? I refer to my loved ones with dementia as my “Lovies”, out of affection. We lost our last Lovie to Alzheimer’s ten years ago and when people ask me if I am glad to be done with the subject, I say, “No, I am just warming up”. I don’t plan to rest until dementia, particularly Alzheimer’s disease, is off the planet.

So…as we observe National Family Caregiver Month in November, there is much to share regarding dementia research, treatment, care, and the hope and optimism that a breakthrough is on the horizon!? While that doesn’t make the responsibilities of providing care for our older relatives less challenging right now, it does give us hope that new approaches and treatments are coming to light every day. There is hope!

In the meantime, a good place to start is with the major quality of life issues for those caring for loved ones with dementia. Here is the list:

Top Ten Quality of Life Issues for Family Dementia Care Partners?

• Regular exercise – check with a doctor first to ensure it’s safe for you
• Eat right to ensure well-being and energy
• Get adequate sleep to restore your mind and body
• Maintain your own health through doctor visits and treatment
• Mind your mental health through counseling and stress management
• Socialize with friends to stay engaged and refreshed
• Participate in activities and pastimes you enjoy
• Pamper yourself – self-care is never selfish
• Ask for and accept help from others – delegate as appropriate
• Arrange respite care for well-deserved breaks for you

And while we are at it, another list that naturally follows this one is the quality of life elements for those with dementia. A survey was done among early-stage patients asking what they hope for throughout their journey with Alzheimer’s or another form of dementia.? Here is what they told us:

Top Ten Quality of Life Issues for Those Living with Dementia

• To continue to do things I enjoy
• To maintain relationships with those important to me
• To continue to communicate and interact with others
• To laugh often
• To feel safe
• To feel valued, respected, and included
• To continue to be physically active
• To have a sense of purpose
• To continue to experience new things
• To minimize loneliness and isolation

This list can serve as our “to-do” list for our loved ones with dementia. I try to read both of the above lists at least once a week to remind me to, 1) Take care of myself, and 2) Better understand what is important to our loved ones.

I hope you will keep these lists handy and refer to them when you are feeling exhausted. I can honestly say that when I reflect on both my corporate career accomplishments which make me proud, and on my family caregiving, the latter always makes me even more proud. Stepping up in their hour of need is something I will never regret.

By the way, I give huge credit to the Employee Assistance Plan providers that I used along the way and to the Human Resource professionals who helped me through their compassion, sensitivity, and flexibility. Each of you has Mines and Associates standing beside you to help. Use us by requesting individual dementia coaching or by suggesting a Lunch and Learn on this important topic.

And for all of you already caring for loved ones with dementia, here is a list of twenty tips to make your day-to-day interactions easier and more effective:

Dementia Communication, Interaction, and Behavior Tips

• Answer repetitive questions cheerfully every time
• Avoid quizzing them – speak in statements instead
• Use short sentences and basic words – no baby talk
• Allow extra time for conversations and activities
• Watch your tone – they will sense impatience
• Limit distractions, particularly in the dining room and bathroom
• Focus on feelings, not facts
• Never criticize, correct, or argue
• Redirect to pleasant activities when upsets occur
• Establish a daily routine
• Avoid forcing activities – suggest instead
• Go with the flow unless safety is involved
• Create a calm environment
• Approach from the front to avoid startling them
• Always maintain an arm’s length when upsets occur for safety’s sake
• Don’t take frustrations personally – suspicion and paranoia are part of dementia
• Take things down a notch in the late afternoon to reduce sundowning anxiety
• Be prepared for unfiltered comments and behaviors
• Report pacing to a doctor – remove fall hazards
• Wandering is the game changer – discuss security and safety with the doctor

As for the future, discoveries and breakthroughs in this field are occurring frequently. Take a look at some highlights:

Dementia Breakthroughs – Hope and Optimism!

News! – We now live in the era of treatment for early-stage Alzheimer’s disease! Lecanemab and Donanemab have both gained FDA approval and Medicare/Medicaid will pay for the drugs and accompanying PET scans and MRIs for qualification and monitoring. This past year, the FDA approved the use of two existing drugs, Rexulti and Somstra, the first for dementia-related agitation, and the second for dementia-related insomnia. Ask your doctor if these or other symptom-relieving medications might be appropriate for your loved ones.

News! – Diagnostics have come a long way. There are now various ways to diagnose dementia, including a new blood test that is 91% accurate. While it has not yet been approved by the FDA, hopefully, it will soon be approved. Having a test that is easily administered by Primary Care Physicians is the key to getting more people diagnosed in time to utilize treatments and lifestyle adjustments that may slow progression.

News! – We now know that 45% of our risk for dementia is due to modifiable factors! This is great news. We can all make lifestyle adjustments to reduce our risk. I never wrap up an article regarding dementia without listing the things we can do to keep our brains healthy.? Here is the list:

Top Ten Dementia Risk Reducers

• Exercise – Regular cardiovascular activity – check with a doctor first
• Diet – Mediterranean type diet – avoid sugary, salty, fatty, and fried foods
• Sleep – Turn off electronics, check with a doctor before taking sleep aids
• Hearing and Sight – Wear hearing aids when needed, treat aging-related eye issues
• Heart Health – Control cholesterol/blood pressure – good for heart, good for brain
• Mental Health – Discuss depression with the doctor – manage stress
• Brain Injury – Wear seat belts and sports helmets
• Smoking and Alcohol – Don’t smoke – limit or cease alcohol use
• Continual Learning – Take classes, learn a language or musical instrument
• Socialize – Stay connected with family, friends, and groups – volunteer!

I hope the lists I have provided in this article are helpful. Remember that stress is a risk factor for dementia and therefore studies show that dementia family care partners can be more at risk for dementia themselves. That is why my motto is: “Self-care is never Self-ish”

Please make this November’s National Family Caregiver Month the month you pledge to exercise, eat right, address your own health issues, get counseling, (available at no cost through your Mines and Associates EAP benefits), and carve out some “me time” to stay balanced and better able to care for your loved ones.

In closing, to all Family Care Partners – please take care of yourselves and treat yourselves like the heroes you truly are.

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To your wellbeing,

JJ Jordan, Mines and Associates Dementia Coach and Trainer