“I want to tell you how much I miss my mother. Bits of her are still there. I miss her most when I’m sitting across from her.”
- Candy Crowley, former CNN correspondent and daughter of Alzheimer’s sufferer
When my mother was diagnosed with a rare form of early-onset dementia at 61 years old, my first instinct was relief. It wasn’t brain cancer. It wasn’t a tumor. It wasn’t Alzheimer’s. I knew nothing about non-Alzheimer’s dementias, and I assumed it was something we could treat, slow down or even reverse now that we had a diagnosis. How naive I was.
Any terminal illness is devastating to patients and their loved ones, but dementia presents uniquely painful challenges. In addition to the emotional toll of watching someone they love fade away until little is left but a physical shell, families of dementia sufferers are faced with complex legal, ethical and financial obstacles as well.
Difficulty of Diagnosis and Lack of Treatment
An estimated 14% of people age 71 and older in the United States suffer from some form of dementia.1 Alzheimer’s is the sixth-leading cause of death in the United States and the fifth-leading cause of death for individuals age 65 and older.2
One of the hallmarks of dementia, particularly early-onset dementia, is that it can be very difficult to diagnose in the initial stages of the disease. Early signs of Alzheimer’s such as forgetfulness, confusion and difficulty finding the right words are often dismissed as natural signs of aging. Non-Alzheimer’s dementias often present themselves with signs that resemble depression like apathy, lack of personal hygiene and personality changes.
Many families suffer in silence for years before a doctor arrives at a diagnosis of dementia. During this time, individuals with early-stage dementia may lose their jobs due to inappropriate behavior or loss of skills, spend money irresponsibly and alienate family and friends through rude or insensitive actions. Once a diagnosis is made, family members may feel a sense of relief because they finally have an explanation for the changes witnessed in their loved one. Unfortunately, that relief is fleeting; rather than offering treatment choices and hope, doctors delivering a dementia diagnosis must tell patients and their families that the only course of action is to make the most of the time they have left. Their loved one will only get worse, and no one survives dementia.
There is currently no cure for Alzheimer’s or other dementias. They are terminal, progressive neurodegenerative diseases that can tear a path of emotional and financial destruction through the lives of patients and their families. Symptoms can sometimes be managed with medication, but in the end stages most dementia patients become completely dependent on family or professional caregivers for their daily needs. Most patients ultimately lose the ability to speak, walk and eat on their own. Due to the inevitable immobility of most late-stage dementia patients, pneumonia, infection and blood clots are common causes of death.
My Mother’s Story
My father and I had been noticing changes in my mother for a couple of years. We initially thought it was depression. Characteristically gregarious, warm and full of life, she had become withdrawn and uninterested in the family and friends who had always been the center of her world. At the same time, she could be inappropriate and rude. The social graces, emotional intelligence and empathy that once defined her and made her a beloved wife, mother, friend and confidante were stripped away. Her impeccable manners and social awareness were slowly deteriorating. She initially had no problems with memory, but she was turning into a different person – cold, detached and completely oblivious to the changes that were becoming obvious to those who knew her well.
We finally insisted that she seek professional help, and not long thereafter, a PET scan revealed significant atrophy in the frontal lobe of her brain. While dementia can only be definitively diagnosed through an autopsy, my mother’s doctors were confident that she was suffering from frontotemporal dementia, a rare dementia that typically strikes patients in their 50s and 60s and typically results in death within eight to ten years after the onset of symptoms.
Over the years following her diagnosis, my mother has adopted various vitamin regimens and taken numerous medications to help reduce her confusion and anxiety. While these have provided short-term relief, nothing has halted or slowed the steady march of the disease. Though her decline has been relatively gradual for someone with frontotemporal dementia, it has still felt far too fast for someone so young.
Six years after her diagnosis, my 67-year-old mother is nearly mute and incapable of standing, walking, bathing, eating or performing any other activity of daily living without total assistance. We think she still recognizes her family and closest friends, but it’s hard to know for sure. She still lives at home with my father but has round-the clock nursing care, including hospice nurses who visit weekly. She requires nearly the same level of daily care that my sons required as infants. I use the word “infant” because, by 2 years old, my sons were far more self-sufficient than their grandmother. Watching them acquire skills and language at precisely the same rate and time that my mother lost those very abilities has been particularly poignant and heartbreaking.
As a trusts and estates attorney, I have long known the importance of planning early and naming fiduciaries in case of incapacity. Thankfully, my parents had put in place proper estate plans years ago, but I had never sat down with them and had a serious discussion about end-of-life planning and what their wishes would mean in reality. I thought those were conversations for the future. After all, my parents were still relatively young. Despite my professional background, I did not anticipate many of the day-to-day questions and struggles that dementia would force us to grapple with.
As my father and I approach the end of my mother’s journey with dementia and strive to provide her with comfort and dignity until the end, I have spent a great deal of time reflecting on those things I am grateful I already knew – and those I wish I had known – before she was diagnosed.
While no amount of advance legal, financial or logistical planning can mitigate the emotional pain of the “long goodbye” that is dementia, putting proper plans and safeguards in place can help smooth a difficult road.
A basic estate plan – which typically comprises a will, revocable trust, health care proxy, durable power of attorney and living will – names fiduciaries to act for you in the event of incapacity and determines how your assets will be held and administered for your family and loved ones after your death. It is important to ensure that your estate plan is up to date and accomplishes your wishes with respect to your family. While I sometimes tell clients that they should plan early but that it is never too late, I must offer the caveat that it actually can become too late in the case of dementia.
“Whether end-of-life care will be provided at home or in a memory care or assisted living facility is another important discussion point.”
In order to execute valid estate planning documents, an individual must have the mental capacity to understand the purpose and effect of those documents. Different legal documents require different levels of competence, and diminished capacity does not necessarily mean that a person can no longer execute an estate plan. A valid will, for example, can be signed in a moment of lucidity by someone who may not be lucid later that same day. However, the more a dementia patient declines, the less likely or predictable his or her mental competency becomes. This can lead to family strife and even legal contests in the case of documents signed by an individual after a dementia diagnosis. Engaging in estate planning early, and updating those plans in a timely manner as wishes change, helps protect individuals and families who are later faced with a dementia diagnosis.
The health care proxy, durable power of attorney and living will are particularly relevant and important in the event of incapacity. A durable power of attorney names someone to make financial decisions for you, including paying bills, if you are unable to make them yourself. A health care proxy names someone to make medical decisions, including the ultimate decision to withdraw life-sustaining treatment, if you are incapacitated. A living will, while not legally binding, provides guidance to your health care agent and loved ones regarding your choices with respect to end-of-life care and treatment.
While a will and revocable trust determine what will happen to your assets after you die, your durable power of attorney and health care proxy dictate who will be responsible for day-to-day decisions while you are alive but incapacitated. In the case of dementia, these fiduciary roles may continue for years, so you should give careful thought to who you name.
Discuss Wishes for End-of-Life Care and Treatment
It is not easy to face your own mortality or that of your parents, spouse or loved ones, but open discussions about preferences for end-of-life care provide valuable information, comfort and reassurance to family members who may have to make difficult decisions in the future.
It is important to name a health care agent who will respect and honor your wishes regarding medical treatment, or lack thereof. If you do not want life-sustaining measures like tube feeding and IV hydration in the event that you can no longer eat and swallow on your own and have no hope of recovery, you should discuss these wishes with your health care agent and be sure that he or she is comfortable following through with them. Some individuals may have ethical or religious objections to withdrawing life-sustaining care and should not be placed in the position of making a decision that conflicts with their beliefs. The more guidance you impart to your family and named agents while you are mentally competent, the fewer ethical questions and struggles they will face if they must step in as your health care agent.
Whether end-of-life care will be provided at home or in a memory care or assisted living facility is another important discussion point. The ultimate decision is often dictated as much by financial and practical considerations as by personal and emotional preferences, but it is helpful to discuss the possibilities with family members early. I caution against putting family members in the position of promising to keep someone at home. Providing in-home care can become impossible for family members for numerous reasons – safety, cost, physical ability to provide hands-on care and so forth – and they should not be saddled with additional guilt in the event they choose to place a loved one in a memory care or assisted living facility.
Ask for Help
For families of dementia patients, their loved one’s disease is a marathon rather than a sprint. While some patients decline quite quickly, others decline slowly over years or even decades. Many spouses and adult children must take a step back from their professional careers, or leave the workforce altogether, in order to care for a family member with dementia. Research by the Alzheimer’s Association found that 17% of dementia caregivers had to give up their jobs to assume caregiving responsibilities.3 Two-thirds of family caregivers are women, and 34% are age 65 or older.4
Once a loved one receives a dementia diagnosis, it is important to begin identifying local support services and care agencies that may be resources in the future. A patient’s primary care doctor or neurologist can be a valuable source of local information. In addition, the Alzheimer’s Association maintains a database of local chapters, support groups and care agencies.5
It is critical that family caregivers take care of themselves in addition to caring for their loved ones. Many family caregivers experience feelings of stress, depression, anger and isolation, which can lead to physical health problems. While asking for help is never easy, it is inevitable that family caregivers will need assistance and support over time. Unfortunately, extended family and friends sometimes withdraw in the face of a dementia diagnosis because they don’t know how to help and may be increasingly uncomfortable around the patient as he or her declines. Reaching out and asking for help early can prevent that withdrawal.
Consider Professional Caregivers and Long-Term Care Insurance
As dementia progresses, the occasional respite and help from friends and family may not be enough. Despite leaving jobs and committing to caring for loved ones themselves, many families ultimately decide that professional help is needed. In the later stages of the disease, dementia patients require round-the-clock care. Deciding what type of care is best, and how to pay for that care, is yet another daunting task for families.
Families often initially hire home health aides or nurses who visit during the day and provide companionship and assistance with activities of daily living. Eventually, patients may need full-time care at home or to move to a memory care facility. While many will require some form of long-term care even if they never experience diminished mental capacity, nearly every individual suffering from dementia eventually requires 24-hour care and assistance from family or professional caregivers, or a combination thereof.
Most long-term care services are not covered by Medicare or traditional health insurance plans because, while critical to daily living, they are not medical in nature. Long-term care insurance can help fill the gap in covering the costs of care that are not otherwise covered by traditional insurance. The following chart provides a breakdown of the average annual costs of the various types of professional care:6
Families without some form of long-term care insurance must pay out of pocket for professional help, significantly depleting financial resources and potentially leaving surviving spouses financially vulnerable. While long-term care insurance may not fully cover the annual cost of long-term care, it can significantly mitigate the annual financial cost to families of dementia patients.
Once a dementia diagnosis is received, it is generally too late to obtain long-term care insurance. Like an estate plan, it is best to plan early by purchasing a policy well before care is needed. These policies can be complicated, and your attorney or wealth planner can help you understand the various options.
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1 Source: Alzheimer’s Association, “2016 Alzheimer’s Disease Facts and Figures.” Alzheimer’s & Dementia 2016.
2 Source: Alzheimer’s Association, “2016 Alzheimer’s Disease Facts and Figures.” Alzheimer’s & Dementia 2016.
3 Source: Alzheimer’s Association, “2016 Alzheimer’s Disease Facts and Figures.” Alzheimer’s & Dementia 2016.
4 Source: Alzheimer’s Association, “2016 Alzheimer’s Disease Facts and Figures.” Alzheimer’s & Dementia 2016.
5 To access this database, visit www.alz.org.
6 Source: Genworth, “Cost of Care Survey 2015.”