Jodi at Alz Association lunchIt can be fascinating, inspirational, even intoxicating to attend a medical conference. The recent Alzheimer’s Association International Conference (AAIC) in Boston was all that and more.

With almost 5,000 scientists, physicians and others seeking a treatment or cure for Alzheimer’s, it was easy to leave the conference on a high. There is tremendous hope for the future owing to the many smart people who are working to beat this disease. Heading home I thought about the many developments that I was excited to share with my colleagues.

As the trip south to Washington, D.C., progressed, however, the high began to mix with frustration at the lack of financial support for Alzheimer’s. That’s a story for another time.

Somewhere around New Jersey, reality struck. Alzheimer’s refused to take a break while we were off at the conference. Although we didn’t witness it directly, the disease marched on, as did its practical consequences. Clients were hospitalized; several were no longer safe at home and needed to be moved; a few probably got in trouble with the law for what appeared to be bad behavior; some had died.

Alzheimer’s disease is about more than Tau and Amyloid and the chemistry discussed at the conference. On a practical level it is a disease that attacks the brain and changes how a person thinks and behaves, and sometimes it changes the person entirely. A comment I hear often as an eldercare advocate: ‘I wish you had known my parent before all this…Alzheimer’s has turned them into someone else – a completely different person.’

Those touched directly by the practical side of Alzheimer’s includes the group of tenacious, overworked and eventually weary family members, friends and professionals known as caregivers. Examples of their dedication are numerous. Yet, I worry about them. Studies show that when a family member or friend is caring for someone with Alzheimer’s, the caregiver’s own health and well-being are compromised. Unfortunately, this is not a surprise. This is especially true for the “club sandwich” generation – those caught among their parents, children, and career.

Caregivers face a multitude of challenges ranging from the physical aspects of taking care of someone who may or may not be cooperative to the emotional challenges of having a loved one disappear before their eyes.

What can we do to help caregivers?  The solutions may be as varied as the challenges. Sometimes it’s lending an ear.  It can also be bringing lasagna or other dish that can be easily re-heated. Sometimes, it’s medical (evaluation and adjustment of current medications) and needs a professional.  The guiding principle is that we need to ask the caregivers specifically what they need and when.  It’s also good to suggest a specific type of assistance, removing the burden from the caregiver. Think of asking ‘What day can I bring over dinner?’ instead of ‘Let me know if you need anything.’

What if you are the caregiver? Perhaps the most important concept to remember is to be kind to yourself. There’s a reason that when you are on an airplane you are told to put your own oxygen mask on before assisting others. You can’t help anyone if you’re unconscious. Stress and exhaustion, which are inevitable, make caregiving even tougher. Do your best to control them.

But how can you do that when your loved one is suffering from this awful disease? Sleep is critical. While it’s true that most Americans, caregivers or not, rarely get adequate rest, caregivers must do their best to get sufficient sleep. Full disclosure: Those who know me are giggling at the hypocrisy of yours truly advocating for sleep. Recently I overslept and missed an early conference call. As I was abjectly apologizing, a friend who is a doctor, said, “Jodi, it’s obvious that your brain needed quality and quantity of REM sleep. What don’t you understand about that?”  Learn from me. All-nighters in college were fun; all-nighters associated with work or caregiving usually are not. In addition, as we age, recovery takes longer. So, caregivers, get your sleep. Take advantage of respite care, friends who are willing to spell you overnight so you can go to a hotel. Also useful are homecare helpers or companions, who can relieve the main caregiver, allowing them to take a nap.

Stress reduction is important. I can’t stress this enough. Seriously, again, it may seem hard to find the time and the resources to reduce stress, but support is available. The obvious solutions include adult day care, home care, friends clubs and support groups. And don’t forget the curative powers of manicures, massages, books or just a walk in the park. Caregivers need to take advantage of whatever makes life easier. Go shopping, hit the gym, or escape with a movie. You will be surprised how much these seemingly mundane activities can help.

I understand that the most difficult part can be for caregivers to avoid feeling guilty when asking others to give them relief. But, as a caregiver or a friend of one, remember the airplane-oxygen mask example. Caregivers should not be afraid to ask for someone to watch a loved one while they seek a mental or physical respite. Unfortunately, it’s common for friends to disappear when someone is caring for an Alzheimer’s patient.  Friends often don’t know what to say or do and are uncomfortable about saying or doing something wrong. Fair enough. One solution is to hire a professional caregiver to watch the person with Alzheimer’s and let your friends take care of you.

Let’s talk about nutrition. I’ll admit that my favorite food group is Diet Coke, which may explain my comments about lack of sleep above. Yet even I recognize that we cannot survive on Diet Coke alone. Frequently there must be Oreos, gummy bears, cupcakes and, of course, ice cream. Seriously, I respect and understand the challenges of dealing with the changing food preferences of someone with Alzheimer’s.  Sometimes it can be funny. A friend with Alzheimer’s forgot that he only ate meat and potatoes. Toward the end of his life, he often consumed Chinese food, Mexican cuisine and ice cream. I guess he forgot that he was lactose-intolerant, too. Sometimes, it’s just hard – like the person who eats nothing but chicken or the one who throws a temper tantrum when offered something he doesn’t feel like eating.  An associated problem is that many caregivers are so tired from making sure that their loved one eats healthy and delicious meals that they neglect their own nutrition and survive on vending machine fare and fast food.  While you know enough about my culinary habits to realize that I understand the caregiver’s dilemma, it’s not a good plan, I’m just saying.

As a caregiver, or a friend or relative of someone suffering from Alzheimer’s, recognize that the challenges and progression of the disease are not your fault, nor the fault of the person with the sickness. Sometimes it is difficult to remember this when you’re trying to re-direct your loved one from behaving ‘badly’ in public, or listening to the same story for the zillionth time, or feeling alone because your spouse is fading away. Caregivers, there are ways to ease your burden. You not only deserve a break, it will make you a better caregiver. Ask for help. And remember, although it might feel as if you are, you’re not alone.


Jodi Lyons is an eldercare consultant and on the Board of Directors of the Alzheimer’s Association National Capital Area (   Thoughts and opinions expressed are her own. Please visit Jodi’s websites:,, and follow her on Twitter @jodilyons1

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