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Caring for a Loved One with Dementia Takes Huge Financial, Emotional Toll

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Every year in late September, people around the globe observe World Alzheimer’s Day. Last fall, to mark the occasion, an organization called Caring.com released the results of a survey that showed just how burdensome caring for a loved one with Alzheimer’s disease and other forms of dementia can be. The poll demonstrates what many already suspected: that caring for a loved one with dementia is far more costly and emotionally draining than any other type of care. Because we get so many questions about this issue at AgingOptions, we decided this article and the concerns it raises are worth a fresh look.

The details about this cost-of-care survey were published in this article which appeared about six months ago on the website of Time magazine. While the article is a few months old, it still makes for sobering reading, and above all it points out the need for honest conversations between family members who may be facing some vital caregiving decisions.

According to the research survey, caregivers looking after loved ones suffering from health conditions other than dementia are indeed bearing a heavy financial burden: just over 10 percent report that their out-of-pocket caregiving costs exceed $20,000 annually. But for those caring for dementia sufferers that figure is almost twice as high, as they shell out even more money for food, transportation, medical care, clothing and a host of other unreimbursed expenses. Nearly 20% are paying out $20,000 or more and at least 40% peg their costs at $5,000-plus. Of course, the financial expense is just one element of the true cost. “The disease takes an enormous toll on families, emotionally, physically, and financially,” says the Time article. “It devours their loved ones and, in the process, can swallow life savings whole.”

What’s often hardest to bear, the article explains, is the progressive worsening of the disease. In the early stages patients may retain a degree of independence, but over time – sometimes sooner than expected – “people need round-the-clock care, making it very difficult for them to remain in their homes,” says Time. This is the devastating prognosis for five million Americans presently suffering with a diagnosis of Alzheimer’s disease, which has no cure and no proven lasting treatment.

Once a patient requires nursing home care, Medicaid may pay the cost depending on the individual’s financial condition. This also applies to in-home care: some people can qualify for some assistance under Medicaid regulations to cover so-called custodial costs at home – assistance related to eating, bathing, dressing and other activities of daily living. But many families, especially middle-income households, will not qualify, and are often on their own to cope with rising costs and escalating needs.

Because of the pain faced by so many families, according to another article that appeared about the same time on the website, the issue of the costs of caregiving even figured in last fall’s Presidential election. Both Hillary Clinton and Donald Trump spoke about the caregiving crisis and each offered partial solutions to help soften the burden. While the details remain unclear, President Trump’s just-announced budget and tax initiatives are reported to include some form of financial breaks for those bearing the cost of caring for loved ones – not only those caring for children, but for house-bound adults as well.

Here at AgingOptions, we have heard sad stories from a great number of radio listeners, seminar guests and clients describing just how financially devastating caregiving costs can be. Our strong advice is to make careful plans early on, and have honest conversations among family members well before a health care crisis hits. This can start with a call to our office, because at AgingOptions we frequently conduct family meetings where all aspects of retirement and health care are carefully reviewed. We can help you and your family members understand your options and plan for the future so that you minimize the likelihood of unpleasant surprises. Contact us any time and let us serve as your guides through the often perplexing array of options and strategies concerning in-home care.

And for all your retirement planning concerns, why not do what hundreds have done and choose the one approach that takes all the key facets of retirement into account? This is the strategy we call LifePlanning, encompassing housing choices, medical needs, legal affairs, family communication and financial asset management in one comprehensive document. With your LifePlan in place, you have the blueprint you need to build a secure and rewarding retirement future.

Your next step is a simple one: attend one of our free LifePlanning Seminars, offered at locations throughout the area. You can click here for dates, times and online registration, or contact us for assistance during the week. Don’t face retirement unprepared! Let us serve as your guide. We’ll look forward to meeting you soon.

(originally reported at www.time.com/money)

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