What is Caregiver Burden?

Photo: Paul Stickman, Unsplash

Caregivers of individuals living with mild cognitive impairment (MCI) or dementia often report feeling stressed.  What does that mean?  How much stress is too much?  What strategies can be used to lessen the feelings of stress?  Why do some people feel it more than others?

Caregiver burden is the stress that is perceived by caregivers.  Because everyone is different, the amount of stress that you feel in a situation can differ from what someone else feels in the same situation.  Peoples’ ability to cope with different stressors is a factor of their own attitudes, resilience and behaviour patterns.  Learning positive coping mechanisms and practicing them repeatedly can help lower the stress for caregivers.

Individual caregivers have full lives outside of their caregiving responsibilities.  They may have children to parent, full or part-time employment responsibilities, financial obligations, hobbies or other pursuits.  Often the caregiving role creeps up on a caregiver, and is a gradual obligation that arises and increases steadily over time.  However quickly that occurs for individuals, it can still be overwhelming, and can become increasingly overwhelming as the disease progresses.  By its nature, dementia is a condition that will worsen in time. It won’t get better.  Along the way, a caregiver’s health may also worsen.  Their career may have increased demands.  They may face financial constraints.  They may have trouble accessing resources and services that help them on their caregiving journey.  There are a number of factors unrelated to the deteriorating condition of their loved one that can affect the ability of a caregiver to provide care.

The single best thing people report that they can do for themselves every day is to get a good night’s sleep.  Prioritizing sleep and practicing good sleep hygiene can go a long way towards reducing feelings of stress.  Ironically, when people’s workload increases, and the problems they have to solve increase, sleep is often the first thing compromised.  This is a huge mistake, because having a good night’s sleep makes dealing with the rest of the day easier.

We realize that this is easier said than done.  Especially when providing care to a person living with dementia (PLWD).  PLWD often experience sundowning, which can interfere with circadian rhythms. Often the PLWD can be agitated, restless and aggressive in the early evening and night times.  This can interfere with the caregiver’s ability to get a good night’s rest.

Tips for coping with this include being prepared, and staying organized.  It is true that sticking to a routine helps your body wind down to sleep at the appropriate time.  It also helps the PLWD, so trying to establish a routine is helpful.  Limiting naps during the day where possible also increases the likelihood of a good night’s sleep.  Exercise earlier in the day can also cause both the caregivers and the PLWD to need to rest later in the day, and re-establish appropriate circadian rhythms.  Trying to complete appointments and more challenging tasks in the day earlier when everyone is fresh is also recommended.  We recognize that not all of these tips will work for everyone; however, doing whatever can be done to get a good night’s sleep is one of the most effective ways of mitigating caregiver burden.

Other strategies include discussing therapeutic interventions for the PLWD and caregiver alike, to help regulate moods, and ensure consistency in the day, so that the PLWD can get good rest.  Consider options such as respite care, or nighttime nurses whose primary responsibility is management of the PLWD, so that the caregiver can rest and recuperate appropriately.  Without self-care, the caregiver runs the risk of being so overwhelmed that his or her capacity to provide effective care to their loved one is severely reduced, and they are unable to do so.  Where that happens, often a crisis situation occurs and the caregiver may end up hospitalized.  Obviously where a PLWD cannot stay home alone, the crisis situation is increased, because care is now needed on an emergency basis for two people.

Tusk is a platform that attempts to reduce incidents of caregiver burnout. We use technology to connect caregivers to navigators, who can help them as and when they need.  Tusk is populated with a library of helpful resources (educational information) that can help caregivers understand the symptoms of dementia, the stages, the disease, and how to manage it.  In addition, the platform is populated with a comprehensive service provider library that shows the available service providers in the area of the caregiver.  For example, if a caregiver were looking for respite options, all of the possible local solutions are populated in the platform.  We also believe that actively monitoring the wellness of the caregivers helps shine a light on the importance of caregiver wellness.  Tusk has a wellness tracker that caregivers can complete daily, to help them become aware of their feelings of overwhelm, and when to reach out for additional support.  Care navigators are trained to help manage these caregivers.  Know that you are not alone!  Many people feel overwhelmed with caregiving duties from time to time.  There are resources available for everyone.  Tusk can help caregivers navigate an unfamiliar system.  We are here to help.