A Springtime Q&A with Dementia expert and Founder of Keep In Mind, Inc. Ellen Belk

Thanks to my client Hearth Management for this second opportunity to answer their Dementia related questions. I’m always grateful for the opportunity!

HEARTH: Sometimes those living with Dementia may make socially inappropriate comments or not recognize their immediate family members, should we be scolding, correcting or continually reminding when these things occur?

ELLEN: Thanks for asking this question; as it is one of the most common ‘coaching’ opportunities I engage in with both professional & family caregivers. The issue of ‘not remembering’ loved ones is especially hard on the actual family members impacted by this unfortunate byproduct of the Dementia journey.

#1 – Socially inappropriate comments. In my 20+ years of Dementia care leadership, I’ve heard sweet elder ladies who sang in their church choir cuss like sailors. One time, I had a male resident tell me “your butt is getting big” in the midst of a group activity. The best way to handle/manage these types of occurrences is to NOT overreact or publically shame the person living with Dementia. Keep in mind, it is the BRAIN DISEASE that is causing these a-typical verbal miscues to occur. So, although it’s sometimes difficult to overlook, it is crucial that care partners keep things in perspective that they are dealing with someone who has a slow, progressive, degenerative brain disease. That’s the root cause. Therefore, it’s unwise to draw even further attention to the situation by scolding the person who is unaware of what they’ve said.

#2 – In regards to family members feeling slighted by not being recognized. I know it is a tough thing to grapple with. However, I do encourage families to remember that although the loved one they are caring for may forget their name or the relationship; they absolutely will respond positively to how YOU make THEM FEEL! Their brain disease impacts their ability to retain information. However, deep down in their heart and soul, where the disease doesn’t touch – they are VERY receptive to how those around them make them FEEL. So, keep smiling, keep laughing, keep hugging, and having fun; because it will create positive vibes and moments that absolutely have a great impact on both the care receiver and the care giver!

HEARTH: We often hear about sundowning with an Alzheimer’s diagnosis. What are some of the top tips you can share with caregivers to help prevent sundowning?

ELLEN: I tend not to use the term ‘sundowning’ because it’s become a negative descriptive word towards those living with Alzheimer’s and other Dementias. What’s really happening is an increase in late-day confusion. We need to remember that it’s exhausting to have Dementia! Whether you live in a professional memory care setting or are being cared for at home; those living with the disease are in a constant state of trying to keep up with the people and ‘world’ around them. As we go about our daily lives, speaking quickly, moving about, performing tasks; those with Dementia have to (internally) work extra hard to make sense of the flurry of activity, communication, environmental stimuli, etc. Keep in mind, if they’ve been up since 8:00 in the morning, they’ve already put in an eight-hour day by 4:00 pm! And are probably exhausted.

Therefore, caregivers will note an increase in confusion, maybe some resistance to care or a change of personality or facial affect. Lethargy or an increase in word-finding issues later in the day may also be observed.

The best way to minimize late-day confusion is to maintain a calm and nurturing care environment throughout the day.  Be VERY mindful of overlapping stimuli like loud television, crying babies, ringing phones, loud chatter, etc. In our hectic world of multi-tasking, healthy-brained folks are almost oblivious to an over stimulated environment. However, for our friends living with Dementia all of that excessive noise is a significant stressor for them. Therefore eliminating it or minimizing it is advised.

Additionally:

  • Maintain a regular daily rhythm as much as possible. Waking up, staying active and engaged, mealtimes, and going to sleep
  • Get outdoors! Daily doses of fresh air have a great impact on overall wellness
  • Avoid caffeine and sugar in the pm hours
  • Be vigilant in day-night prompts. Curtains & windows open to let the sunlight or daylight in during the day and closing curtains as the sun goes down to signal evening is approaching
  • Consider diffusing lavender in the air in the hour(s) before bedtime or simply add a few drops of lavender essential oil to a warm washcloth when they clean their face at night. It’s a relaxing and holistic intervention

HEARTH: Many people seem to think that forgetfulness, confusion, and maybe even Alzheimer’s is a normal part of aging. What are the top 3 things you recommend people look for as potential ‘forgetfulness flags’ that need to be investigated?

ELLEN: Just to be clear, we ALL get a little forgetful as we age. It’s not uncommon to forget what you went into the kitchen for. Or the name of that restaurant you ate at last month.  In these scenarios; if you retrace your steps back to the family room and then remember what you’d gone into the kitchen for – HEALTHY BRAIN!  If you couldn’t remember the name of that restaurant from last month before you went to bed (and you didn’t google it) then remembered the name when you were brushing your teeth in the morning – HEALTHY BRAIN!

Warning signs to be on the lookout for however are: When something historically very familiar becomes unfamiliar or unrecognizable

  1. Like if Sally has been playing cards every week with her four gal pals for the last 15 years like clockwork and she begins to forget what day she plays or the names of the gal pals or where she’s supposed to meet them – this is a sign that something may be out of alignment and should be investigated further
  2. If your husband or father dressed in a suit & tie for work and left the house each morning at 7:30 to drive the same 16-mile route to the office for over a decade and he begins to sleep past his alarm and isn’t able to coordinate his clothing or maybe gets lost on the way to work and ends up at the deli around the corner from home – this is a sign that should trigger further investigation
  3. If your loved one begins to struggle balancing the bank account, paying bills on time, or meeting deadlines more frequently, when historically they were in charge of paying the bills and didn’t have issues meeting time-sensitive deadlines – this is a change-of-condition that should be further explored with a doctor

Bottom line, when historically normal tasks become so difficult that they are having a negative impact on the person’s daily functioning AND the person themselves has a lack of concern or cannot even recognize that something isn’t right – that’s when it’s time for those around them who love and care for them to seek the advice of a doctor.

If you or your organization would benefit from submitting questions directly to me that I can answer for your upcoming newsletter, BLOG posts or informative marketing collateral, don’t hesitate to reach out directly to me thru the CONTACT US page!