By Dr. Emily Reilly, DHSC., M.S. OTR/L, Founder/CEO Purposefully Home
Family members, primarily spouses, often adjust their roles and routines to take on caregiver responsibilities. The onset and progression of cognitive decline among loved ones brings unexpected dynamics within a relationship to maintain typical patterns. Small modifications may go unnoticed, but over time the caregivers’ increased responsibilities and concern for safety and uncertainty ultimately produce stress and burden. When families are not adequately educated on what to expect and symptoms associated with their loved one’s condition, the quality of life of both the individual and the primary caregiver suffers.
Occupational therapists play a crucial role to prolong the function of a person to maintain autonomy and dignity of individuals along with their caregivers. Collaborating with family members and caregivers in treatment sessions will support meaningful activities and promote carryover within their home and community environment. In addition, by providing education and role training, caregivers may better understand how to engage with their loved ones in a new context while maintaining an appreciation for their distinct capabilities. Preparing family members for disease progression may improve success at home and allow individuals to remain “aging in place” for a longer duration than if they had not involved occupational therapy in their care.
Often as clinicians, we hear caregivers report struggles of feeling helpless, overwhelmed, and isolated. They no longer partake in social activities because they feel embarrassed and are concerned their loved one may be a burden due to mobility issues, dietary restrictions, or incontinence. Isolation can have detrimental effects on health and wellness including difficulty sleeping, depression, and increased stress. Occupational therapists can work with individuals and their care partners to create a plan that eases the burden of care and maximizes quality of life no matter what stage in the disease process they may be.
Occupational therapists see people with unrealistic expectations. Ways to identify what an individual may be capable of to enhance success are available. Communication, grooming/hygiene, self-feeding, and engagement in leisure activities are the most common, and we occupational therapists can help set you up for success!
The top five tips for caregiver training and support:
Speak WITH your loved one and avoid correcting them if they make comments that are not true. Ask questions and join their reality. Help them feel as if they still have some control in their life by letting them make decisions and offering them choices.
- Minimize Stress
Our sensory system can become overloaded, and to prevent burnout or behavior responses from our loved ones, limit causes of stress or “triggers.” Light sensitivity, noise, smells, and visual stimulation may affect our mood and behavior, which indirectly causes stress responses.
- Maintain Consistency
Routines are helpful for scheduling and tracking things such as medications and appointments. The finer details such as likes, dislikes, and typical patterns of doing things are important. A primary caregiver may not consider this until someone steps in to help, and things may not turn out as planned. We recommend keeping a calendar, journal, or “manual” of sorts to keep everyone on the same page.
- Be Social
Caregivers and their loved ones stopping engagement in meaningful activities is a leading cause of isolation and depression. Some hobbies may seem impossible, but with some adjustments and modifications, getting out of the house regularly is possible.
- Set-up for Success
Caregivers want to be helpful and make things easier for their loved ones. Often, we see how the caregivers inadvertently do too much, which leaves their loved ones feeling helpless. Simplify the environment and ask for help. Provide choices in activities that may take too long for a person to do on their own, such as getting dressed. Find “assembly” type recipes such as crockpot meals, salads, tacos, sandwiches, and foods that don’t require cooking. If you as the caregiver have to manage incontinence episodes, be sure to set up the space with all the supplies to avoid having to go from room to room “in the moment.”
Many helpful tools and tips to promote happy, healthy care-partner relationships are available. Occupational therapists train specifically in managing the person, their environment, and meaningful activities. We at Purposefully Home realize a “one size fits all approach” doesn’t work, and we are eager to spend time with you to create solutions that work for you.
As always, “Live your Life with Purpose!”
Dr. Reilly is the Founder/CEO of Purposefully Home. With a background in occupational therapy, home modifications, and the person/environment relationship, Dr. Reilly works with individuals and their care teams to optimize the functionality of the home environment. www.purposefullyhome.com