Caring for a loved one with Alzheimer’s disease or a related dementia is a complicated existence shared by an estimated 16 million Americans, who dedicate more than 17 billion hours of unpaid care each year. Approximately two thirds of these individuals are women. One third are 65 years of age or older.1 The demands of caregiving take an excruciating toll on relatives, as they navigate the details of a very long and painful goodbye that is physically, mentally and emotionally taxing. The designation of November as “National Family Caregivers Month” celebrates these every-day heroes who make sacrifices, daily, that impact their own well-being in myriad ways. This awareness month initially started as a recognition week in the mid 1990s. Its focus is to acknowledge the supreme effort made by caregivers and promote awareness of resources available to them that can potentially alleviate the burden of their service.
There are many signs that indicate that a loved one is suffering with a form of dementia, the diagnosis of Alzheimer’s disease can still generate initial disbelief in family members. Internationally recognized caregiver, advocate, and author of Diary of a Caretaker, Pablo Barredo, shares that “When the diagnosis arrives, there are many who stagnate in denial. Denial does not help. However hard it may be, however shocking and painful it may be, we must assume and accept the disease from the beginning.”2 The demands of caring for a loved one with Alzheimer’s in their own home is all-encompassing, and many caretakers put most aspects of their personal lives on hold, intensifying emotional ramifications.
Not all caregivers are able to develop a sustaining network of personal support to augment their duties, even periodically. Social isolation can lead to feelings of resentment, guilt, hopelessness, and despair. There are also serious economic implications, if a caregiver, who has formerly been working, must take leave of current employment or is unable to consider future opportunities for career advancement. Fortunately, there are resources and organizations that can provide guidance, and in some cases, meaningful relief.
The establishment of medical observance days/weeks/months have driven awareness about many illnesses and conditions, not the least among these being Alzheimer’s. Perhaps the most recognized non-profit is The Alzheimer’s Association, the leading voluntary organization for Alzheimer’s care, research and support. From their website, caregivers can find resources virtually, as well as in their communities, with local chapters and support groups located throughout the country.
Other useful resources include the following:
Alzheimers.gov is a federally sponsored resource site with multi-tiered support, including information on joining clinical trials. While there is currently no definitive cure for Alzheimer’s, great strides are being made in the conduct of clinical research. Biogen’s recent announcement that it is resurrecting a drug that the company had previously classified as having failed and is asking the Food and Drug Administration to approve, is escalating interest.
Increasingly, many individuals and their families are turning to clinical trials as a healthcare option in order to participate in groundbreaking therapies or treatments to stem the tide of symptoms of this debilitating, progressive, disease. There are studies that work to find improved methods of diagnosis, and others that focus on understanding quality of life issues for patients and caregivers, alike.
Sponsors/CROs routinely provide patient and caregiver transportation options, elevating the likelihood of enrollment and participation in clinical studies. Patient travel specialists understand the intricacies of the protocol at hand and can explain them thoroughly to patients/caregivers. They also know that there is no one-size-fits-all approach to patient travel, since participants require varying modes of transportation and may have complex medical needs. Itineraries must be tailored to the specific situation and have the caregiver in mind, as well.
AARP Family Caregiving offers free care guides, legal checklists, an online community and other caregiver support options, starting with a simple three-point questionnaire to target caregivers’ unique needs.
National Alliance for Caregiving focuses on improving the lives of caregivers and those in their care, through advocacy and research.
National Institute on Aging, a branch of the National Institutes of Health, provides information on prevalent age-related health issues and a section dedicated to caregiving for people with serious illnesses.
Well Spouse Association advocates for individuals caring for a chronically ill or disabled spouse or partner and offers an online chat forum.
The economic implications of providing care at home are in many cases, dire, particularly if the patient and caregiver were, until recently, both employed. Avenues of relief may be found through insurance, retirement benefits, government assistance and community support services3. Another option that can augment the loss of or decrease in income is the execution of a reverse mortgage on a currently owned home and/or liquidation of other personal assets. Some individuals with dementia, who are younger than 65 years of age, may quality for Social Security Disability (SSDI) benefits.
Self-care for caregivers is not a luxury, it is an absolute necessity. It enables them to continue with the mighty responsibilities that they are willing to undertake and avoid caretaker burnout. Their role is complicated and fraught with stress, whatever stage of illness their loved one is experiencing. As the illness progresses, other family members and friends may feel ill-at-ease and ill-equipped to bolster the caregiver’s efforts. It is essential that caregivers investigate available resources, and decide which are best implemented, such as short-term, professional respite care, in order to maintain their own well-being.