Question: What legal issues need to be dealt with when caring for my relative with dementia?
Answer: After providing patients with a new diagnosis of dementia, one of the topics I always talk about in that initial session, are the medico-legal issues that should be dealt with as soon as possible. These include powers of attorney, advanced directives, and wills.
In general, if the patient has been diagnosed early enough, and is still capable, they, along with their lawyer, can create or revise these legal instruments to the satisfaction of the patient. Once the dementia is more advanced, most patients will eventually lose capacity and will no longer be able to accomplish these important tasks. The discussion that follows is dependent on government legislation, and will vary from province to province and country to country. While for the purposes of this blog I will refer to the current situation in the Canadian province of Ontario, the general instruments will be the same, but the details and their execution may differ depending on where you live. It is always wise to discuss these issues with your lawyer.
Power of attorney (POA) is a legal instrument that allows someone else to make decisions and act for you, if you are unable for any reason. In general, two such documents should be available – a POA for personal care, and a POA for finances (also called a POA for property). A POA for personal care will allow the person who you appoint to make medical decisions, while the POA for property can make financial decisions and transactions, such as paying bills and purchasing items on your behalf.
In order to make POAs, the person must have “capacity,” which means they must understand the nature of the instrument and be able to choose someone to act on their behalf. For the POA for property, they will also have to demonstrate to some degree, knowledge of their financial situation including the value and type of their finances, as well as being able to identify their dependents and debts.
Depending on how the POA is written, they can come into effect immediately, or be triggered by specific circumstances, such as the person being declared incapable of managing their affairs. I generally recommend that if possible, a single person, who knows the patient well and is in close contact, be chosen to act as POA. I have seen too many unfortunate situations where all the children are chosen as attorneys, and they end up disagreeing, leading to family feuds and delaying decisions for the patient. If more than one person is chosen, there should be a method included in the document for dealing with disagreements among the POAs. While free, predesigned POA documents are available (see for example Office of the Public Guardian and Trustee, Ministry of the Attorney General, Province of Ontario, website), I generally recommend seeing a lawyer, especially if your finances, and/or family situation, is complicated.
In the province of Ontario, there is no such thing as a “living will” from a legal perspective. According to the law however, a POA is supposed to make decisions based on the previously expressed wishes of the incapable person. That is why it is so important to ensure your POA knows what you want. This can be done verbally, or in writing. Your POA should know what type of care you want, especially near the end of life. For example, do you want comfort measures only? Do you want tube feeding if that becomes necessary? Do you want cardiopulmonary resuscitation (CPR)? You should also discuss whether you are interested in research studies.
I appreciate that discussing wills at the first meeting when receiving a diagnosis of dementia may not seem politically correct. However, this is always done after a discussion about prognosis, when I tell the person that, in general, they will likely have a lot of quality time left. Similar to POAs, in order to do a new will or update an existing one, the person must be capable, in this case referred to as “testamentary capacity.” In order to have testamentary capacity, the person must be aware of their assets, have knowledge of who would ordinarily have a claim to their estate, be free of any false, fixed beliefs regarding potential inheritors, and should not be seen as being “unduly influenced” by any of these individuals. Once again, depending on the complexity of their estate and their family situation, the capacity necessary to do a will could vary considerably.
While it is ultimately the responsibility of the lawyer who helps drawing up the POAs and will to determine capacity, they do have the option to request an opinion from the physicians involved in the care of the patient, or even medical doctors (MDs) who specialize in medico-legal assessments for these purposes.
As mentioned above, attending to these medico-legal issues as soon as possible is clearly in the best interest of the patient and their family. This is one of the arguments I make to family MDs who can be reluctant to send patients to memory disorder specialists, because of their impression that diagnosis, in the absence of effective treatment, is not useful.
About a POA, you say that it may, “be triggered by specific circumstances, such as the person being declared incapable of managing their affairs.” Some people with dementia don’t think they have any impairment.
I wonder how is the declaration arrived at? Who makes it? Who decides when a POA can be exercised?
The POA document will indicate how the instrument is activated, and this should be reviewed with a lawyer. Some POAs become activated immediately on signing, and some will be activated under certain circumstances. The standardized POA documents available in Ontario for instance, are activated only when the person is declared incapable to manage their property (i.e. their finances) under the Substitute Decisions Act. In this case, an Assessor from the Public Guardian and Trustees Office will have had to be engaged, to assess the person (with their permission) and determine their capacity. Obviously, this might become problematic if the person lacks insight as you describe in your comment. That is why it is preferable to have a more specific POA written by a lawyer, which might include the instructions that the POA can be activated whenever the POA deems necessary, when the Family MD feels the person lacks capacity, or under more specific and detailed circumstances.
Hi Dr. Herrmann. I am a US resident, and my aunt lives in Ontario. She has been showing severe signs of dementia but her husband feels helpless because he says he is not allowed to speak to my aunt’s doctor and that since my aunt does not trust him, he is unable to do anything to help her. (she thinks he is trying to poison her, that he brings other women to the house, and other fantasies). I’m trying to understand what can be done so I can help my uncle who is having a very rough time. How can dementia be diagnosed so that my uncle is actually able to care for my aunt?
In Ontario and most jurisdictions, the personal health information and privacy legislation that governs health care practitioners would not allow the physician to provide any health information to you or your aunt’s husband, without your aunt’s permission. However, there is absolutely nothing that bars you or her husband from contacting that MD either by phone, email, or even in person, to provide the doctor with information about her health or express concerns about how she is doing. It would then be up to the doctor to decide what should be done next, but at the very least, he/she should assess her with those concerns in mind. If your aunt’s cognition, function, or behaviour will result in imminent harm to her or someone else, the Mental Health Act allows for a variety of responses including calling the police, appearing before a Justice of the Peace, and/or having the family MD complete a mental health act form which would compel her to undergo a psychiatric assessment in hospital.
Hi Dr. Hermann. I am a Canadian resident with an elderly father with vascular dementia and 2 previous strokes, in residential care (nursing care). My question is medico-legal regarding declaring incompetency of handling his own affairs as he is starting to request thousands of dollars on hand, purchasing a car he would be unable to drive (no license, would not be qualified), etc. I am the only active caregiver and do hold all of the usual medico-legal paperwork that my father put in order a few years ago so I could manage his affairs. My question is, with his new requests which are not in his best interests, is it adviseable or necessary to get him legally declared incompetent?
Hi. The answer depends on the province/country in which your dad resides, as all these issues differ from province to province, and country to country.
In general, as POA for property, it should be your responsibility to protect your Dad’s estate, based on his previously expressed wishes. If, in your opinion, your father is making inappropriate financial decisions based on the impairment from his dementia, it would be best to speak with his MD and then a lawyer about how best to proceed from a medicolegal perspective. While he may need to be declared incapable to manage his affairs, the process differs based on the exact wording of the POA document, and the local legislation. Best of luck!
Hi Dr. Herrmann,
I work in private retirement communities. What I often find is that those with more moderate stages of dementia that develop behaviours while living in their own home are very difficult for the family to manage. For example, residents refuse to take medication, refuse to use a walker, refuse to bathe, send home care help away, stop eating, devlop infections etc. No one can “force” these individuals to do these activities. Families often watch their parent decline not knowing how to help. What are families to do when doctors are unwilling to declare an elderly person incapability of making there own medical decisions? Even if they are declared incompetent, can they really force someone to bathe or take medications. Do they have to wait for an emergency room visit before they can act? These seniors are often at medical and financial risk due to ‘stubbornness’. They experience personality changes and start lashing out at their family who is only trying to help.
Hi. People with moderate dementia living on their own are my professional nightmare! The scenarios you describe are unfortunately not uncommon, and current medicolegal regulations in most western countries have made it increasingly difficult for families to intervene until danger is “imminent”. That is the price of ensuring personal liberties and limiting professional paternalism. I spend a lot of time empathizing with families in this situation, and telling them that sometimes, people need to get much worse cognitively or functionally before the family is able to intervene. As you note, it sometimes does require a crisis or an emergency room visit to finally enact an appropriate care plan.
Having said all that, caregivers should be aware that there are resources in many communities that might be helpful. Some communities have mobile crisis teams,and/or home visiting psychogeriatric services. In certain locales presenting before a Justice of the Peace, or utilizing the Public Guardian may allow intervention. Finally, in many communities, Community Relations Officers from the Police Department, can be very helpful.