Teepa Snow, MS, OTR/L, FAOTA
Lewy body dementia presents unique challenges when it comes to independent living skills, personal care skills, and daily routines and habits. Unlike other dementias, the cognitive abilities of a person with LBD fluctuate from day to day or even hour to hour. Motor symptoms may also vary without warning. Those daily changes can be frustrating for both the person with LBD and their caregiver. Here are some helpful tips for providing care and support that encourage a sense of independence.
Build a Caregiver Support System
It may seem odd to start this article by first addressing the needs of caregiver. However, since the well-being of the caregiver directly influences the well-being of the person with LBD, this is an important place to begin. The person living with LBD may develop one of two patterns of behavior when receiving support from a caregiver, though some people demonstrate both at different times. These patterns may be influenced by personality traits and existing roles and relationships.
- Some people seek greater help and guidance from their care partner. They may follow the partner almost all the time (shadowing). They also may ask for guidance and support, even when they are already starting to do the very thing they are asking about.
- Others struggle against the increasing loss of independence when others ‘take over’ what they have been able to do on their own. They may perceive it as a sense of loss. This often leads to frequent episodes of resentment, anger, and frustration when the person believes the care partner is trying to take things away from them, make them do things, or ‘control’ them.
Care partners will need strong support systems for themselves in both scenarios. Care partners need regular time away from the person with LBD who tends to ‘shadow’. Early expansion of the support team is going to make the long-term journey better for both. Introduce a new person who will temporarily provide caregiving support while the caregiver enjoys a break. Not only does it provide help to the caregiver, but provides a new relationship and social interaction for the person with LBD.
In the second scenario, emotional support and space allows caregivers to relieve stress and be rejuvenated. This restores the “emotional reserve” caregivers can draw on to keep their cool. Behavioral changes are a normal response to increasing confusion and psychiatric symptoms of LBD. Learning to step back and process the experience, recognize symptom manifestation, and let go of the emotional tension is critical to long-term caregiving success.
If the person with LBD is especially confused, being unreasonable or cannot think logically, it’s time to change activities in order to avoid an unproductive confrontation. Caregivers may also need to remove themselves entirely from the situation in order to allow the person with LBD the needed personal space to calm down. With the cognitive fluctuations in LBD, there may be a time later when you can revisit the activity, provide care, or have a conversation more effectively. Ask yourself whether there is any real harm in setting an activity or discussion aside for an hour, a few hours, a day or even a week.
Create a Daily Routine
Develop and use daily routines that includes:
- Exercise – Consider aerobic, strengthening, coordination, and flexibility exercises.
- Self-care – Encourage the person with LBD to continue using their self-care skills where they can. This helps to maintain their dignity and self-esteem. Modify the degree of caregiving help provided as skills change.
- Leisure activities and social groups – Find ways the person with LBD can enjoy familiar leisure activities, making modifications as needed based on functional abilities. If necessary, evolve from doing the activity to watching it. Consider providing some education about LBD to friends and social acquaintances, so they can help the person with LBD feel included and successful.
- Work or productive activities – A little caregiver creativity can help the person with LBD feel they are still contributing to the household. Find small chores they can do, such as putting clean silverware away, folding towels, matching socks, or sweeping the floor. These tasks will take them longer to do and may even need to be re-done later, but helps to engage the person with LBD in meaningful activity.
- Rest times – Provide breaks in the routine throughout the day, as daily naps are very helpful to a person with LBD. An additional caregiver may be needed at night to ensure that the primary caregiver gets rest when insomnia is problematic.
- Outings – Plan activities that take place out of the home for the person with LBD with friends or neighbors as their mobility allows.
- Flexibility - Be willing to change the daily routine and schedule, if it is not working in the moment and try again, when it seems symptom presentation has changed.
Bring in the Professionals
Tap into resources like occupational, physical and speech therapists, as well as counselors.
- Modify the home for specific safety concerns that are identified. This may include, walking pathways, hand rails, corners and edges, space concerns, walking surfaces and footwear, handheld devices and controls for heating-cooling, cooking devices, power tools, and heights and locations of storage areas.
- Consider the need for rehabilitation for mobility and functional losses.
- Be realistic about the possibility of long term care as needs and abilities change.
- Get counseling and support if mood and personality changes are affecting relationships and roles in the family and community.
About the Author
Teepa Snow is an advocate for those living with dementia and has made it her personal mission to help families and professionals better understand how it feels to be living with such challenges and seeks to change and improve life for everyone involved. Her practice has included everything from neuro-intensive care units in tertiary hospitals to in-home end-of-life care in rural parts of the North Carolina. She has taught at medical schools and post-doctoral programs, health professional programs, colleges and universities, community colleges, and community centers. She led educational and training efforts as the Educational Director of the Eastern NC Chapter of the Alzheimer's Association for many years and was a major contributor and author of the in-depth hands on training delivered to family members and staff that led to the production of the DVD, “Accepting the Challenge: Providing the Best Care for People with Dementia,” an internationally recognized resource for training and understanding dementia. She has served as an interdisciplinary team member and helped develop and conduct clinical research with leading researchers in dementia and geriatric care. To learn more about Teepa Snow, please visit www.teepasnow.com.