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 of feeling embarrassed; concerned their loved one may be a burden due to mobility issues, dietary restrictions or incontinence issues. Isolation can have detrimental effects to 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 and there are ways to identify what an individual may be capable of enhancing success. Communication, grooming/hygiene, self-feeding, and engagement in leisure activities are most common and we as occupational therapists can help set you up for success!
Here is our top 5 tips for Caregiver Training and Support!
Speak WITH your loved one, avoid correcting them if they make comments that are not true. Ask questions and join their reality. Help them feel they still have some control in their life by letting them make decisions and offering them choices.
2. Minimize Stress
Our sensory system can become overloaded to prevent burnout or behavior responses from our loved ones, it is important to limit causes of stress or “triggers.” Light sensitivity, noise, smells, visual stimulation may affect our mood and behavior and indirectly cause stress responses!
3. 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. When there is a primary caregiver they 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.
4. Be Social
Leading causes of isolation and depression are when caregivers and their loved one’s stop engaging in meaningful activities. There may be hobbies that seem impossible but with some adjustments and modifications it’s possible to get out of the house regularly!
5. Set up for Success
Caregivers want to be helpful and make things easier for their loved ones. Often we see inadvertently how the caregivers do too much leaving their loved one’s 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.”
There are many helpful tools and tips to promote happy, healthy care-partner relationships. Occupational therapist train specifically in managing the person, their environment, and meaningful activities. We at Purposefully Home realize there is not a “one size fits all approach” and are eager to spend time with you to create solutions that work for you! As always, “live your life with purpose!”