Nancy Langman is a mental health and public health nurse practitioner on Martha’s Vineyard and an Adjunct Clinical Instructor at the University of Massachusetts Amherst. The author has no financial relationships to disclose.
Caregivers, mostly family and friends, play an important role in the complex care of persons with Alzheimer disease and other dementias. Primary care providers are uniquely positioned to assess for the negative consequences of caregiving, including depression, anxiety, and caregivers' failure to care for their own health needs. This article provides you with reliable, valid screening tools and recommendations for evidence-based interventions to increase the caregiver’s and patient’s quality of life and care.
Henry, a retired health care administrator, received a diagnosis of Alzheimer disease in his early 80s. Given his career experience, he knew where this disease might take him. His wife, Joann, worked in admissions in a nursing home prior to retirement and was equally informed of the course of the disease. They were among the more fortunate ones struggling with this life-changing diagnosis, in that they had a great primary care provider, access to some of the best neuropsychologists and neurologists in the country, financial stability, and adult children nearby.
Caregivers are a rapidly growing segment of the system of care in the United States, with more than 15 million providing care for those with Alzheimer disease (AD) and other dementias, according to the Alzheimer’s Association.1 Lack of training and support puts caregivers at risk for depression, anxiety, and failure to take care of their own health.2
The incidence and prevalence of dementia continue to increase as the population ages, placing an enormous emotional, physical, and economic burden on caregivers as well as families and society. Given our rapidly growing elderly population and the important role caregivers play, providing evidence-based care and support for caregivers of dementia patients should be a priority for primary care providers.3 Progress in this area requires primary care practitioners to take a lead role in addressing the complex issues that adversely affect caregivers and their loved ones.3 Nurse practitioners (NPs) and physician assistants (PAs) are in a pivotal position to implement caregiver screening and provide referrals to evidence-based interventions.
Who are the caregivers? Caregivers in the US are predominantly women, and they provide 75% to 80% of long-term care in the community.4 They are largely untrained, unsupervised, unpaid, and undersupported in our society. There are many faces of caregivers: elderly spouses who themselves have health care challenges; adult children, often referred to as the “sandwich generation” as they care for their own families as well as their aging parents; nieces, nephews, and other relatives who find themselves in the position of being the only family left to care for a loved one; and paid caregivers, who also experience the stress of caregiving. Caregivers face many challenges that create both psychological and physical stress, as they are increasingly expected to provide more demanding and complex care, including medication management.4
The MetLife Mature Market Institute reports that 20% of working female caregivers older than 50 experience depression, compared to 8% of peers who are not caregivers.5 Depression among caregivers is well documented, with evidence showing that clinically significant symptoms of depression occur in 40% to 70% of caregivers and that 25% to 50% of these caregivers meet criteria for major depression.6
