The Heavy Burden of Dementia

Most of us know of someone who has been diagnosed with dementia.  It is a costly, heart-breaking and life-altering syndrome that is nearly doubling in numbers of people affected worldwide every 20 years. Dementia has affected the likes of Norman Rockwell, E.B. White, Rita Hayworth, Charlton Heston, Ronald Reagan, Charles Bronson, Margaret Thatcher, and even our own local hero Pat Summitt.  It does not discriminate based on station in life, and its effects are widely dispersed. This edition of ElderCounselor will focus on dementia and its effects on society and families, as well as what an Elder Law attorney or elder care professional can do to help.

What is Dementia?

Dementia is a general term for a decline in mental ability severe enough to interfere with daily life.  It is not a specific disease, but rather a term that describes a range of symptoms associated with loss of mental ability caused by damage to brain cells.  Alzheimer’s Disease is the most common type of dementia, accounting for 60 to 80 percent of all diagnosed cases, but dementia or dementia-like symptoms can be caused by many different conditions ranging from stroke to thyroid problems and vitamin deficiencies.  Most conditions that cause dementia are permanent and progressive, meaning they get worse over time, though some can improve with treatment.

Not everyone who has memory problems has dementia!  Some causes of memory loss which may cause symptoms resembling dementia are actually reversible conditions.  For a diagnosis of dementia, at least two of the following mental functions must be significantly impaired:  memory, communication and language, ability to focus and pay attention, reasoning and judgment, and visual perception.  Symptoms of dementia may become noticeable when the person with dementia has problems with short-term memory, keeping track of personal belongings, paying bills, planning and preparing meals, retracing familiar directions, or travelling out of the neighborhood. In the long run, these often progressive symptoms usually necessitate assistance with daily activities, resulting in increased expense and stress on the individual, their family members, and society at large.

If your client or loved is exhibiting any changes in thinking skills or is having memory difficulties, encourage them to see a doctor immediately to find out the cause.  Some causes may be curable; and even if the affected individual does have a non-curable form of dementia, early diagnosis gives the individual a better chance of slowing the disease’s progression and gives the whole family more time to plan for the future.

Effects on Society

In April 2013, the results of a decade-long study by the RAND Corporation were published in The New England Journal of Medicine. The study sheds light on dementia statistics, including rates of diagnosis and costs to society.  According to the study, the national cost of caring for those with dementia – which is already higher than the cost of care for patients with heart disease or cancer – is projected to double by the year 2040.  The direct costs of dementia, including the cost of medicine and nursing homes, was $109 billion a year in 2010 compared to $102 billion for heart disease and $77 billion for cancer. This cost is pushed even higher, to $215 billion, when support from family members or other loved ones is given a cost value. This figure is predicted to rise to $511 billion by 2040. Information from the RAND study and from the Centers for Medicare & Medicaid Services indicates that, by 2020, dementia patients will account for about 10% of the elderly population while direct medical spending on them will equal about 17% of projected Medicare and Medicaid spending on the aged population.

Effects on the Family

While the cost of dementia to society is great and will likely have a substantial impact on all of us, the financial and emotional costs to individuals diagnosed with dementia and their loved ones is even more significant.  According to the RAND study, each individual case of dementia can cost between $41,000 and $56,000 a year.  As if the financial burden isn’t enough, caring for a loved one with dementia is extremely challenging and emotionally draining.  As the condition progresses, the diagnosed individual may exhibit troubling behaviors such as aggression, suspicion, a tendency to wander away, and a failure to recognize their dearest family members and friends.  In many cases, caregivers are not physically or emotionally prepared to deal with these behaviors on their own.  Caregivers are often at increased risk of depression, anxiety, and other long-term medical problems.  Professional assistance either in the home or in an assisted living facility or nursing home may become necessary.  For some it is difficult to know when to seek help or what services are available.

An elder lawyer, elder care coordinator, or geriatric care manager can help the individual with dementia and his or her family to create a plan for managing the disease and all the burdens associated with it.  Medical treatment is only one piece of the treatment puzzle.  The family also needs to consider financial planning, including asset protection planning and possibly provisions for long-term care in a facility; legal planning to make sure that the diagnosed individual’s wishes are carried out even if he or she cannot advocate for him or herself; home and community-based services which can prolong independence and quality of life while relieving the caregiver burden; and finding other ways to reduce the physical and emotional stress for the individual with dementia and his or her caregivers.  Seeking help from an elder care professional can ensure that the person with dementia receives the best possible care as well as help the whole family gain access to a number of valuable resources and help restore the family’s peace of mind in a very unsettling and emotional time.

Conclusion

Dementia poses higher costs to society and individuals than heart disease or cancer, and these costs are projected to continue rising over the next few decades. Most significant is the cost of care for the patient with dementia. The individual with dementia progressively requires more and more help with daily activities, and this is the biggest cost of the debilitating syndrome. With help from an Elder Law attorney, care coordinator, or other elder care professional, the family of those afflicted with dementia can obtain the support they need to care properly for their loved one.

Please contact us at Elder Law of East Tennessee if you have a client or loved one who has been diagnosed with dementia or is at risk of developing this debilitating syndrome.  Our goal is to create a holistic plan to address all the medical, financial, and care needs of the diagnosed individual and his or her loved ones so that everyone enjoys the best possible quality of life.  Get in touch with us by sending an e-mail to info@elderlawetn.com or give us a call at 951-2410.

Alzheimer’s Association  Dementia Resources

• Checklist: 10 Early Warning Signs

• Local Resources for People With Dementia

• Alzheimer’s and Dementia Caregiver Center

• Dementia Planning Tool:  Alzheimer’s Navigator

• 24/7 Hotline: 800.272.3900