In the post, I will look at some of the challenges of caregiving for a loved one with dementia and provide some resources for this growing population. November is also National Alzheimer’s Disease Awareness Month. Here’s a link to the Alzheimer’s Association’s caregiver center, which has helpful information and resources.
As we approach the holiday season, it struck me that it would be a good time to revisit this topic. The holiday season and its focus on family activities and get-togethers, can cause additional strain to family relationships made stressful due to an elder parent or loved one’s dementia.
The first important detail is that people with dementia are usually cared for by family members or friends and the most of them (about 80%) are receiving care in their homes. Here are some numbers from the Centers for Disease Control:
Each year, 15 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimer’s disease and related dementias. More than six in ten (62%) caregivers were women, almost one in four (23%) were 65 years of age and older, and three in ten (30%) had children under 18 years old living with them.
Caregivers of those persons with dementia usually provide such care for a longer period than the caregivers for other diseases or conditions, and the CDC statistics on this demonstrate that
More than four in ten (43%) caregivers of people with Alzheimer’s and related dementias provide care for one to four years, and more than three in ten (32%) are caregivers for five years or more. For other types of chronic conditions that require care, more than three in ten (33%) caregivers provide care for one to four years, and almost three in ten (28%) are caregivers for five years or more.
Caregiver stress, caregiver burnout, and for premature death for an elder spouse of a person a suffering from dementia are all very real risks here. The demands of caregiving for a loved one with dementia subject the caregiver to greater risks of anxiety, depression and overall poorer quality of life. So, that is the bad news. . . so what kind of resources are available to support these caregivers?
There are a range of options to consider of course, as every person or family’s situation is unique. Perhaps all that is really need is a bit of respite care. Sometimes just the prospect of respite care being available can make a huge difference in the emotional health of a family caregiver. Here is a link to the Colorado Respite Coalition, which has a variety of resources available.
The vast majority of caregiving in this country is done by family members free of charge. For many people however, volunteering these services is simply not a financial option. Here’s a link www.disability.gov, the federal government’s website that has links, resources and helpful information for family caregivers as well as information about how family caregivers can get paid to perform such services. And here is a link to the eldercare locator, a public service of the U.S. administration of Aging. The Medicare.gov site also has some information that can be helpful to caregivers about what Medicare provides. The AARP site lists these five skills that help persons care for the elders they love: observation (paying attention to changes); organization; communication; questioning and tenacity.
Several of the helpful sites above advise elders to put important legal documents in place while the elder retains capacity to do so. When will you know whether a power of attorney is needed? Chances are good that it will be too late for an elder with dementia to execute a power of attorney once it is determined that such a document is needed! So, I will close this post with a reminder concerning a couple bare minimum documents which are required to ease the burden of family caregiving: a health care power of attorney (with a conversation about end of life wishes with the named agent, successor agent and perhaps other family members) and a general durable (financial) power of attorney.
Both of these documents are planning documents that are designed to prevent the need for later protective proceedings in probate court – for guardianship and/or conservatorship – in the event of an elder’s inability to manage their money or if they become incapacitated due to advancing dementia. The American Bar Association’s “tool kit” for advance health care planning has good questions to consider in how to select your agent and list your priorities. Remember, one of the best ways for elders to NOT be a burden on their loved ones is to plan ahead and the value of that advance legal and medical planning should not be minimized.
© Barbara E. Cashman 2016 www.DenverElderLaw.org