Making Sense of Guardianship
Caregivers for people with Alzheimer’s disease often reach a point when they realize their loved one is unable to make rational or informed decisions. If their parent is cooperative and easy going, this incapacity may not be a problem. But if it’s coupled with a tendency to stubbornly refuse assistance or care, it can be dangerous. This is when guardianship can be an important tool for families. Guardianship also can be required when a person with Alzheimer’s or dementia is no longer able to legally sign power of attorney documents due to mental incapacitation.
Guardianship gives you the legal right to make decisions for a parent or loved one with Alzheimer’s or dementia. Guardianship is obtained through a court proceeding and granted by a judge.
When Guardianship is Required
The elderly parent who lives alone in an unsafe condition but who refuses assistance is an archetypal character in the world of the senior advocacy. For instance, imagine a senior named Elda who has Alzheimer’s disease:
Elda’s grown children became concerned because she’s living alone with Advanced Alzheimer’s. Elda recently left the stove on again and started a minor, but very smokey kitchen fire. Her children unplugged the oven, so she’s been eating generic goldfish crackers and Pepsi (refusing the meal delivery her children attempted to arrange). She has sundowners and often wanders the not-so-safe neighborhood at night looking for a corner-store that closed 20 years ago. She has lost $20,000 and counting to Nigerian email scammers. And she recently fell, bruising her hip badly after tripping on a box of old newspapers in her cluttered apartment. Her children know she’s a disaster waiting to happen.
If Elda continues to refuse assistance in this situation, the best option for her family would be to seek guardianship.
Authorities of Guardians
Guardians have the same sort of authority a parent has over minor child. With guardianship, families can assure that their loved ones who is mentally incapacitated due to Alzheimer’s disease and other types of dementia are:
- in a safe and dignified living situation
- free from financial exploitation
- able to receive necessary long-term caregiver
- able to receive necessary medical care
How to Obtain Guardianship
America is built on due process. Depriving an adult of his or her rights is no small thing, so these court proceedings assure guardianship is not abused. In the proceeding, the family member who is seeking guardianship (the petitioner) must provide evidence that the person with Alzheimer’s disease or dementia is incapacitated and proof of their own ability to be competent guardians
Determining whether the person with Alzheimer’s disease or dementia is competent is usually the easy part. A court psychologist will have typically made that determination before the hearing, although the petition can present additional evidence at the hearing.
But the bulk of the court proceeding is used to establish that the petitioner is an appropriate guardian. The Alzheimer’s Foundation notes:
“The court scrutinizes all of the actions of the guardian, including the management of the individual’s personal financial affairs, and decisions regarding medical treatments and long-term care. Some states even require a potential guardian to take a court-approved class in order to learn about their responsibilities.”
People seeking guardianship need to demonstrate that there is care plan in place and will make appropriate use of their parent’s funds. If the court agrees that the petition would make an appropriate guardian and that the senior is genuinely incapacitated, guardianship is granted.
If you are in a position where you may need to initiate guardianship proceeding, you should consult with an elder attorney if possible. Elder attorneys specialize in matters such as guardianship. That said, because this is similar to family law and a fairly simple proceeding it is not uncommon to seek guardianship without an attorney. If you do have to initiate a proceeding without an attorney, make sure to do in depth research online and at your local library so that you are able to navigate the proceedings effectively.
Establishing Emergency Guardianship
Though most people are experiencing mild to moderate impairment by the time they’re diagnosed with dementia, they’re also still typically capable of understanding their situation and making decisions. Even if your loved one hasn’t created an estate plan and power of attorney at the time of diagnosis, you likely still have time to work though the process and make a satisfactory care plan, including choosing health care and financial representatives.
However, there are a couple of cases where you may need to establish temporary or permanent legal guardianship as a first step. For instance, if:
1. Your loved one is being financially exploited. According to Kim Boyer, founder of Boyer Law Group, this scenario unfortunately common. “Some predators are professional scam-artists,” she says. “They identify single, elderly people who are slightly impaired and have no family around. They then gain the victim’s trust, and get access to his or her funds.” In other cases, caregivers, whether family members or hired help, are themselves the perpetrators of financial abuse.
2. Your loved one truly lacks the capacity to make his or her own decisions, and has not appointed anyone to do so in his or her place. This situation is more common when a relatively young person experiences a catastrophic event, such as a major accident or a stroke, than it is in the case of cognitive illness, but it does occasionally occur.
In either case, both a physician and the court will have to declare that the patient lacks the capacity to direct his or her own care. From there, gaining guardianship is a matter of showing that you’re fully willing and capable when it comes to acting in your loved ones best interest.
Outside of not having felonies or bankruptcies on your record, Boyer says that one of the most important considerations is whether or not you’ve been involved with the patient’s money in the recent past, and particularly whether you’ve made any questionable transactions. “If you want to be appointed someone’s guardian, one of the best things you can do for yourself is to stay completely away from their money,” she concludes, “No matter how you stack up on paper, the court will do its best to look at your actions.”
In certain cases, mental functions decline extensively with advancing age. The reasons for this progressive degradation vary with the individual, but dementia, sparked by conditions such as Alzheimer’s disease, diseased blood vessels in the brain, and Parkinson’s disease, is a leading cause.
The loss of mental functions constitutes a profound tragedy for the individual and those who love him or her. It also creates a serious legal problem. The condition negates a fundamental assumption of law: that an adult person possesses the ability to decide on matters concerning property or person for their benefit. This assumed capacity for rational decision-making is the foundation that supports the concepts of independence and autonomy of the adult person.
When this mental capacity is lost, incapacitated individuals would operate in a legal limbo — without the ability to decide for themselves, but having nobody authorized to decide for them. In such a situation, the law has two mechanisms for empowering someone to act in behalf of the incapacitated individual.
Substitute decision makers
First, the concerned individual, before losing mental functions, appoints a substitute decision maker — or an attorney-in-fact — through a legal document known as a durable power of attorney. This is a private solution, which if properly executed will be recognized by the laws in all states. The durable power of attorney should specify the powers to be delegated to the attorney-in-fact (also called the agent).
Second, in the absence of a durable power of attorney from the concerned individual, the courts of the state may appoint a guardian of the person and/or a guardian of the estate. (The person may also be called a conservator, depending on the state.)
Appointment of a guardian
First, there must be a petition for guardianship filed with the court. In the ensuing guardianship proceedings, there must be presented proof of the proposed ward’s loss of mental capacity, such as a specific diagnosis. But a mere diagnosis that a person is demented is not sufficient basis to declare him/her incapacitated. The definition of an “incapacitated person” as specified in the Uniform Probate Code must be satisfied.
“When mental capacity is lost, incapacitated individuals would operate in a legal limbo — without the ability to decide for themselves but having nobody authorized to decide for them. In such a situation, the law has two mechanisms for empowering someone to act on behalf of the incapacitated individual.”
Under current practice, the courts prefer to impose guardianship only if there is compelling evidence that an individual cannot take personal charge of his/her care requirements. The mere fact that an individual is aged, retarded, or even mentally ill may not necessarily mean he/she needs to be declared legally incompetent.
Once the court is convinced of a person’s mental incapacity, it then needs to determine that the appointment of a guardian is the only means to provide essential services and protection needed by the individual. If the person’s needs are being adequately provided for through other arrangements, a guardian may not be appointed.
These alternative arrangements may be in the form of a durable power of attorney, joint ownerships, a living trust created to manage the person’s assets, an advance health care directive, and a duly appointed representative to receive veterans or social security benefits.
Such arrangements help the individual to avoid guardianship, a process that can entail huge costs and a lot of time. But for individuals who have failed to make preparations for a possible loss of mental capacity, guardianship might be unavoidable.
Alzheimer’s may be one of the most frightening health challenges today. Over five million Americans—one in eight age 65 and older and one in three age 85 and older—are living with dementia and we don’t yet have a treatment that can prevent or cure the disease. But these men and women are not alone. They are supported by 15.5 million family members and friends, and there are things we can all do to ease their burden.
In 2015, Alzheimer’s and other dementias will cost the nation $226 billion, with half of the costs borne by Medicare. Last year caregivers provided 17.9 billion hours of unpaid care, averaging 22 hours per week and valued at $217.7 billion annually; $34 billion annually is lost in revenue/productivity due to caregiving responsibilities. Unless something is done, in 2050, Alzheimer’s is projected to cost up to $1.1 trillion (in 2015 dollars). This is both financially and socially unsustainable.
The War on Alzheimer’s is a top health care priority, and researchers are hard at work developing new drugs to treat, prevent, and slow the disease. We need increased federal and private sector funding to enable innovation in the field of cognitive disorders, and new initiatives in Washington are moving forward.
It’s time for a nationwide effort to educate Americans about dementia, equip business owners and first responders to recognize and assist those with memory loss, and empower people with Alzheimer’s and dementia to engage independently and safely in community life for as long as possible.
The Dementia Friendly America Initiative was announced on July 13th at the White House Conference on Aging. This collaborative effort is fostering dementia-friendly communities across the United States that will support those living with dementia and their caregivers and families. More than 50 organizations including AARP, the Alzheimer’s Association, CVS/Caremark, the International Association of Chiefs of Police, the National League of Cities, and USAgainstAlzheimer’s have joined forces to make dementia friendly communities a reality across America.
Six pilot programs are already underway in cities and counties in Colorado, California, Arizona, West Virginia, Maryland, and in my home state of Tennessee. Nine more are planned for next year. These communities are working toward dementia friendliness by raising awareness about dementia and transforming attitudes, supporting caregivers and families touched by the disease, and promoting meaningful patient participation in community life.
These programs can make a huge difference in the lives of patients and their families, and there are successful examples worldwide: In Bruges, Belgium, a global pioneer in dementia-friendly communities, a community choir is made up of dementia patients. In the UK, local bus drivers were offered additional training to recognize and meet the needs of dementia patients giving them freedom and safety to rejoin the community. Another program in the UK trained hairdressers to work with dementia patients with a twofold purpose: to raise awareness of the disease and to offer a service valuable to patients.
The Dementia Friendly America Initiative wants to implement similar community efforts. We can help train workers in a wide array of sectors such as banking, retail, public service, transportation, and places of worship to recognize signs of cognitive impairment and to communicate with those with dementia and their caregivers so that they feel safe and respected during daily activities in the community.
We can work to build and communicate support systems and services for caregivers like counseling, support groups, adult day care, and respite care. Offering education and training on dementia for caregivers, their employers, and the community as a whole will promote a culture of awareness and help caregivers to maintain their own health and well-being as they care for their loved one.
Dementia and Alzheimer’s disease can be profoundly lonely for both the patients and their isolated caregivers, but our hands are not tied. Our opportunity to better support families impacted by dementia is tremendous, and our Dementia Friendly America Initiative is leading the way in making dementia-friendly services the new norm.
NPR has a wonderful series, Inside Alzheimer's which features longtime New England journalist Greg O'Brien, who was diagnosed with early onset Alzheimer's disease in 2009.
In the latest installment, O'Brien talks about losing his sense of taste and smell, and how he's learning there's much more to a good meal than food.
Greg O'Brien has always loved summer grilling with his family on the back porch of his home on Cape Cod, picking up hamburgers or that day's catch to savor with sweet corn and ripe tomatoes. But as his short-term memory has begun to fail, Alzheimer's disease has also begun to deaden his appetite.
Over the past few years, Greg has largely lost his sense of smell, and he can no longer taste most foods. His favorite dishes, he says, "taste like rolled up newspaper."
In fact, every part of putting food on the table has gotten tougher, from driving to the store, to buying groceries, to cooking.