25 Oct 2018
The estimated total cost of care in the U.S. due to dementia will top $277 billion this year. Behind this staggering number are all the individuals and families struggling to cope with this devastating illness and its financial repercussions.
Spouses who are caregivers are often struggling with their own health issues. More often than not, children become the primary caregivers. Those children may also be caring for their own children or grandchildren in addition to the parent with dementia: all leading to caregiver stress and burnout.
Perhaps the largest source of stress is the emotional factor. Losing the person “you know and love” to this disease is very difficult. There is grieving that happens – even though the person is still alive. It also changes the dynamic of the relationship. Whether it is the spouse or a parent, the caregiver eventually takes over all decision making. The person affected by the illness does not understand or accept their limited abilities. Sometimes, it is the caregiver who has difficulty accepting the new reality. These caregivers may get very frustrated with their parents’ forgetfulness. Or, they may expect their parent or spouse to participate in decisions they are really no longer capable of making. All of this is very upsetting. To make matters worse, caregivers tend to neglect their own physical health and mental well-being.
Another source of stress is handling the actual care. This can be with regard to managing finances, staying on top of medications, scheduling medical appointments, arranging for home care, or actually providing direct care such as dressing and bathing. This will impact your own schedule and take time away from other aspects of your life, including your own family or employment. In 2018, the Alzheimer’s Association reported that 16.1 million caregivers are providing unpaid care to those with dementia.
Finally, there is the financial strain. This can include the loss of your own income due to time away from work to provide care. Or, you may be paying others to care for your loved one. A home health aide can cost upwards of $25 an hour. Twenty-four hour live-in care can easily run $300 a day. Nursing homes come in at $14,000 a month. These amounts represent a financial burden for most of us.
When faced with so many stressors, it is essential for caregivers to reach out for support. The local office of the Alzheimer’s Association is a great place to start, especially when it comes to learning more about the disease process.
To develop a plan very specific to your loved one and your family’s unique needs, you may also seek the support of an elder care expert, who can review your situation and help connect you with the right resources to obtain services and to pay for them. Due to the high cost of care, Medicaid is often central to the process of paying for long-term care – so you can access help without losing all of the assets your loved one worked for.