On Dementia

My father has been battling ever-worsening dementia for several years now and my mother – bless her – takes care of him full time. They’re best friends and are fortunate to have been at each other’s side since their teens. He doesn’t always recognize his eight children or – on several unnerving occasions – even her, his wife for over 56 years. It is a cruel thing, this disease, and yet oddly there’s some positive in this madness.

You see, Dad sees us all as “pals” now – his word, not mine. When he answers the phone at their Cape house, he’ll cheerfully hand the call off to Mum, saying a pal is on the line. If we sit with him at the kitchen table at their condo, he’ll tell her he’s enjoying chatting with his pals. He’s always pleasant if not downright cheerful and happy to see you, whoever you are, ending every visit with the admonishment, “Don’t be a stranger.” We can agree on the heartbreaking version of that sweet saying – as in, don’t fade from my memory – but I prefer to think that of it as my dad’s Irish side, imploring that you “come ‘round again soon.”

Through the twists and turns of each passing business day, I’ve been beyond fortunate to be connected to experts who know far more about this topic than I ever will. I speak of the elder & estate planning attorneys, financial advisors, health care professionals, and countless others who are all so well-versed in understanding aging and the failing mind. On the chance that dementia is also an unfortunate reality for you, or you sense it’ll be something your family will wrestle with soon, perhaps the notes below, summarizing some of my recent lessons learned, will be of some help.

• Home is a physical place but also a state of mind and often a patient will want to return to a prior residence, believing someone is looking for him.
• The person you’ve always known is still there and it’s important to mimic what she knows – her habits, patterns, interests, and hobbies.
• Don’t patronize, rather validate his whims, cheerfully following the direction of the conversation.
• So-called therapeutic fiblets – diversion, redirection, and white lies – are alright to create comfort.
• Sun-downing, fading at day’s end, can lead to emotional shifts and swift changes in behavior; it is important to be mindful of the hour.
• Including her in simple everyday tasks creates spirited inclusion, preventing learned helplessness.
• The key is that he has a sense of purpose, feeling vital, important, energized, and connected.
• Print up instructions with large fonts so that your loved one can read them independently, meaning she feels resourceful and you don’t have to continuously repeat yourself.

The Four Big To-Do’s

Healthy Diet

• Consider the MIND Diet.
• Partial adherence may reduce the risk of the disease by 35%.
• Avoid red meat, butter, cheese, pastries & sweets, fried or fast food.

Daily Exercise… of Some Type

• Use creative invitations to get him/her up and moving.
• Even causal exercise reduces anxiety, increases alertness, and promotes normal routines.
• As it is with anyone, side benefits are a feeling of accomplishment and an improved mood.

Cognitive Stimulation

• Make it person-centered, person-appropriate.
• Reduced depression means reduced caregiver stress.
• Better sleep, self-esteem, social and mental stimulation are vitally important.

Socialization

• Slows progression of the disease.
• Is foremost provided by the caregiver.
• Is crucial as friends fade away due to awkward situations.

Please understand that these notes are written by a mere layperson – a son watching his once vibrant and creative dad fade away. For professional advice, I refer the reader to the works of John Zeisel, Dan Cohen, and Rudy Tanzi. And if their opinions are in any way controversial, I beg your pardon.