Being a primary caregiver, particularly for a loved one with Alzheimer’s disease, dementia or other health conditions, isn’t an easy job. For many, the role can be emotionally, physically and financially taxing, which can lead to caregiver fatigue or burnout.
Knowing how demanding caregiver roles can be, a recent study published in the scientific journal Nature highlights the importance of why caregivers need respite care, or a short-term break from their duties, which can be arranged for several days or weeks.
“Assuming the role of a caregiver for a person with Alzheimer’s disease often requires a significant commitment of time and personal resources,” said Kimberly Blanchard, DNP, APRN, an adult-gerontology primary care nurse practitioner with Rush Memory Clinic in Chicago.
She added caregivers often have higher rates of social isolation, depression and stress, and many may also delay their own health care maintenance or seek medical attention much later than they should—which can have a significant effect on their overall health and well-being.
…caregivers often have higher rates of social isolation, depression and stress, and many may also delay their own health care maintenance or seek medical attention much later than they should…
“Taking a step away is sometimes the best thing you can do for your loved one, and will benefit both of you in the long run,” she said.
What else you need to know about the study
Researchers from Thailand studied the prevalence of behavioral and psychological symptoms of dementia (BPSD) and its association with dementia severity. By looking at this, they were able to explore the links between specific BPSD symptoms and how they might impact caregiver stress, burden and depression.
They analyzed a total of 102 patients with Alzheimer’s disease (AD) along with their caregivers; 45% of participants had moderate-to-severe AD and nearly 99% exhibited at least one symptom of BPSD, including apathy (74.5%), irritability (69.6%), sleep disorders (66.7%), agitation (54.9%) and aberrant motor behavior (51.0%).
The researchers found caregiver burden was associated with only one BPSD symptom, which was agitation, after adjusting for caregiver age, sex, relationship type, the severity of AD, and other domains of BPSD.
“Our results were in line with previous studies, which found that agitation or aggressive behavior was the predictor of caregiver depressive symptoms, even though more BPSD were found to be associated with the caregiver symptoms than the present study,” the authors wrote.
They also found caregivers displayed higher rates of burnout when they were working with patients who displayed symptoms of agitation.
“This symptom could be related to the inability to express needs verbally, for example, pain or unmet expectations,” the authors said. “Thus, the patients express those feelings with agitation, which could impact the caregiver’s feelings resulting in stress and depression.”
In addition, when caregivers feel distressed or burdened, they may act or communicate with inappropriate verbal, vocal or motor behaviors associated with agitation.
Lastly, they discovered sleep disorders (such as insomnia and wandering) tended to lead to depression in the study. For example, a caregiver might think they cannot rest at night to take care of their loved one.
“In conclusion, BPSD, especially agitation and sleep disorders, can give rise to difficulties for both patients and their caregivers, which highlights the benefits of treating these specific behavioral symptoms for patients and caregivers,” the authors wrote.
What impacts do behavioral and psychological symptoms of Alzheimer’s and dementia have on caregivers?
As noted in the study, several behavioral and psychological changes can occur in people with AD and dementia—including depression, anxiety, delusional thoughts, paranoia and even visual or auditory hallucinations. On top of those, other symptoms of dementia, such as apathy, can be especially hard to manage, Blanchard said.
“The caregiver may attempt to engage and stimulate their loved one, but they are met with resistance or passivity and this can result in feelings of hopelessness and frustration for the caregiver,” she added.
Lisa Marie Chirico, certified grief and life intuitive coach, said many of the other symptoms of Alzheimer’s and other types of dementia – such as loss of memory, mood and personality changes, and difficulty performing routine tasks – can have an emotional and physical impact on caregivers as well.
“For a caregiver, the changes taking place with their family member delivers a double dose of pain and loss because they are impacted alongside their loved ones as they witness the devastating toll of the disease,” she said. “Caregivers often feel as though their mom, dad, spouse, brother or sister that they know and love is slowly disappearing right in front of them.”
Chirico added that, in general, most caregivers find dealing with chronic stress has the biggest impact on their overall health. Caregiving usually results in sleep loss, anxiety and depression.
“Many caregivers put their own health and wellness on a shelf as they laser in on their loved one’s needs, which can result in negative long-term impacts,” she said.
How caregivers can care for themselves
According to Chirico, if caregivers refuse or don’t seek any type of assistance, they can develop health issues that arise from their experience with chronic stress, along with despair and even resentment toward family members who are not supporting the primary caregiver.
She said it’s important for caregivers to look after themselves and take advantage of respite care or temporary breaks when needed. Some ways to do that include:
- Connecting with others through caregiver support groups.
- Joining organizations like the Alzheimer’s Association that assist caregivers by connecting them with resources tailored to their unique needs.
- Taking advantage of community programs that may offer some respite care services.
- Adopting positive coping strategies to deal with stress, including eating healthy, maintaining a good sleep schedule, keeping in touch with friends and family, learning to quiet the mind through meditation, and making some form of physical activity a part of their daily routine.
“If a friend or family member offers assistance in any way, say yes and do not feel guilty about it,” Blanchard said. “It can be hard to ask for help, but if you are feeling distressed, exhausted or burnt out as a caregiver, or your physical health is suffering, you’re less equipped to care for someone else at the same time.”