Letting the Outside In

Finding outside caregivers for your loved one can be integral in helping to keep them living at home longer, or to provide more personal 1:1 care at a long term care center. This can take many forms- a volunteer from church coming to the house a few hours each week, a home health aide 5 evenings/week, an overnight every night, or anything in between. But after making dozens of calls, asking for recommendations, meeting with agencies, and paying for care, many families become frustrated rather than relieved once the care begins.

Frequently families tell us they are exasperated due to what seems like a rotating roster of aides in the home, who don’t appear to communicate with each other or with the primary caregiver about the patient’s care. Even if a primary aide is arranged and known to the family, substitutes may fill in frequently. Patients react different based on their connection with each caregiver and lack of consistency can be unsettling, leading to agitation. If the caregiving team (personal and professional) has continuity and effective communication, the patient will feel more secure and their family will feel more confident in those who are providing the care.

As humans, we relate to each other by listening to stories about who we are, were and want to be. Our loved ones with dementia cannot communicate this to a new caregiver; it’s our job to do it for them.

There are many ways to foster better communication- but in this digital age, the written word can be the easiest for everyone involved.

• Try putting a bright-colored binder on your kitchen table, or any central spot where each caregiver will see it. On the front, write: CARING FOR ‘LYDIA’ (insert name) – CAREGIVERS, PLEASE READ AND COMPLETE LOG ON EACH VISIT!
• Page 1- a picture of your loved one earlier in their life, or a collage of photos showing them in different settings, with family, etc. One of our patients was microbiologist at a prestigious university and seeing her as a 35 year old sitting next to an electron microscope helped us walk in to her room at the memory center with a unique appreciation for her story and life experiences.
• Page 2- their life story (recruit your kids or grandkids to type and print pictures)- include siblings and parents, hometown, schooling, jobs, hobbies, personality traits, likes, pet peeves, things they enjoy talking about or doing.
• Page 3- description of the current situation including any recent health concerns. Include the goals of care at this point in time (this will change but could be finding calm in the afternoons, heal from a recent injury, prevent more falls, improve sleep habits). Think of the most pressing issues for the caregivers to be aware of. If you are unsure, discuss this with the medical team at your next appointment.
• Next, create a page with columns: date, time of visit, caregiver name, patient’s mood during the visit, activities/conversation topics, what worked during difficult moments, what did not work well or seemed to upset them, any “as needed” medications given. These should be tailored to your situation.

Every few days, review the log- has listening to classical music in the afternoon brought a sense of calm when she’s upset, does he do better with a warm bathrobe put in the clothes dryer before showering, has she needed more sedatives the last few weeks, is he sleeping better since the timing of his medication was changed? Has she responded better to certain caregivers and if so, can they be requested more often?

Use these answers to start conversations and brainstorm ideas to allow for better patient care, less stress for the patient and family, and clearer communication throughout the entire caregiving team.

Have you found ways to effectively communicate with members of the caregiving team? We can all learn from each other- please share in the comments.