Yesterday afternoon (1.12.17) I attended a 90 minute webinar sponsored by AFTD – The Association of Frontotemporal Degeneration. As a facilitator for a FTD support group, and soon to be the New England Regional Coordinator (volunteer) for AFTD, its important that I continue to learn and expand my knowledge base. The educational program was geared toward FTD patients and their caregivers, but the information was also pertinent to those with Alzheimer’s and other forms of dementia.
Dr. Alvin Holm, of Bethesda Hospital in St. Paul, MN, was the presenter for this education program. “A Paradigm for Persons with FTD” covered a lot of important information, but I would like to share details from the treatment section of his presentation and important information I have learned over the years.
Dr. Holm identified 3 overlapping areas of treatment:
Disease Therapies ~ Wellness Management ~ Environmental Support
All three are independent of each other, yet they are totally dependent upon each other and must be integrated in order to provide the best possible care for the patient. I want to address the effects our environment has on FTD, Alzheimer’s or other dementia patients.
** The physical environment in the patient’ s home setting can not be ignored. It needs to be SIMPLE with clutter, scatter rugs, extra furniture, etc. removed. Your personal home may look quite different than it always has, but simplicity is a must.
** Patients need a stable, consistent, predictable physical environment. Getting new furniture, moving the location of furniture or changing the paint on the walls can be very upsetting to a dementia patient. It breaks their routine and their comfort zone… even moving their seat at the dinner table can have a negative affect on them. Routine, routine, routine.
** Consistency applies to caregivers in the home or a memory care unit as well. At home, it’s important to maintain a log of things that do and don’t work for the patient and what the triggers are that upset the patient so he/she then becomes agitated or anxious. Just as cooks have different recipes for the same dish, so to caregivers interact and communicate differently with patients. Having family meetings, no matter where the patient lives, allows everyone to “be on the same page” regarding care and communicating effectively with the patient, thus working toward a goal of consistency 24 hours a day.
** What are some of the environmental distractions that can be so upsetting to a dementia patient? There are many.
Loud Noises (Barking dogs, Loud music, Children’s voices, People talking/laughing, Loud TV, Clatter of dishes, Children’s toys, Silverware hitting a plate, Chiming clock)
Lights (Too bright, Too many of them, Too many shadows, Light hitting directly in their eyes)
People (Large crowds – that could even be 5-6 people, Multiple conversations, Constant movement from room to room or within a room, Multiple colors and prints of clothing, Variations in male & female voices or accents, Being asked too many questions, Someone coughing constantly)
General Confusion (Heavy traffic & beeping horns, Holiday shopping, Doctor’s waiting room, Walking on a busy street, Being in a grocery store or at a place of worship, Facility dinning rooms or entertainment settings, A passing ambulance or firetruck)
Long Term Situation As time moves forward and your loved one’s disease progresses, you may find that what worked previously, may no longer be effective or appropriate. If there seem to be additional triggers that are causing more intense reactions from your loved one, step back and evaluate why those triggers might be happening and what might need changing to simplify life for the patient. There may not need to be many environmental changes in the earlier stages of the disease process, but when you begin to see behavioral changes, you need to look at your environment with a fresh pair of eyes. A “family meeting” with all those who are caring for your loved one – family, friends, professional caregivers – where you can evaluate and discuss what is happening will simplify life for the patient and make the caregivers’ lives more manageable.
Photo Credit: thomasmartin142.blogspot.com