Dementia and planning ahead for your parents: What you need to know about end-of-life matters

Here’s food for thought: One in 10 seniors, who are aged 60 and above in Singapore, has dementia. By age 85, up to 50 per cent of elderly individuals will be affected – which means if both your parents live to that age, one of them is likely to develop dementia.

Dementia is a term that describes the decline in brain function caused by changes or damages to the brain. For instance, in Alzheimer’s disease, which is the most common type of dementia in Singapore, the brain cells are damaged by abnormal proteins. In vascular dementia, another common type of dementia, the brain cells are killed off by a series of strokes that result from blood vessel blockages in the brain.  

But no matter the cause, the symptoms – such as memory loss, language difficulties, mood changes and decline in mental functions, including concentration and problem solving – are not only irreversible but progressive, and can cause significant distress to both patients and caregivers.

DON’T DELAY THE END-OF-LIFE CONVERSATION  

The situation can be further exacerbated by a common blind spot: The lack of end-of-life planning. For instance, your mother may require specialised care for Alzheimer’s and you need to access her savings for medical and caregiving expenses.

But if she lacks the mental capacity to authorise you and without a Lasting Power of Attorney (LPA), you can’t. Your father’s wish on how he wants to be medically treated may not be carried out if there wasn’t any Advance Care Planning (ACP) or Advance Medical Directive (AMD).

According to Esther Chua, a nurse clinician from the National Neuroscience Institute’s Department of Nursing, the majority of patients and their family members don’t look into such matters until it’s too late.

“Being Asian makes it harder to talk about end-of-life matters as many are very pantang (superstitious),” said Chua. Many also think that they have time before initiating such conversations. They could be “focusing on other priorities such as practical caregiving matters and difficulty accepting the diagnosis of dementia”.

Chua has seen the repercussion repeat itself over and over again in her line of work. “It is common for family members to experience roadblocks such as managing finances or making care decisions on behalf of their loved ones. Having an LPA and ACP make it much easier to navigate these challenges, and avoid delays, administrative hassle and additional legal costs that can occur.”

WHAT IS THE RIGHT AGE TO START?

There isn’t an optimal age to start looking into these matters when life is so unsure, said Judy Ang, a managing partner of JS Law Chambers. The COVID-19 pandemic certainly made that clear. “Sometimes, the unexpected happens and it may be too late to take any measures then.”

To avoid learning the hard way when it comes to your parents, put these affairs in order when they still have the mental capacity, said Ang. “While any subsequent amendments may cost money, these are necessary expenses to reduce the risk and possibility of family disputes in the event something unfortunate happens.”

For yourself, make an LPA at the earliest opportunity you can get. Once you have started working and have some assets to your name (such as insurance or investments), when you have dependents or when you become a caregiver, get it done, said Tan Shen Kiat, the CEO, founder and director of Kith & Kin Law.

WHAT ARE THE LEGAL MATTERS TO LOOK INTO?

You’ve seen LPA, ACP and AMD being mentioned a few times already. What exactly are they and how do they put control and decisions back in the hands of patients with dementia? Here’s a look:

• LASTING POWER OF ATTORNEY (LPA)

This is why the LPA is such an important legal document for dementia patients: It allows a person who is at least 21 years of age (the patient or donor) to voluntarily appoint one or more persons (donee or donees) to make decisions and act on his behalf if he loses mental capacity one day, according to the Ministry of Social and Family Development’s website.

Who can issue the LPA and what does it cover?

The LPA certificate can be issued by a lawyer, psychiatrist or doctor (known as the certificate issuer) and it can only be made if your parents are capable of making decisions independently. That’s because there are a few things for Mum and Dad to consider:

1. How many donees to appoint?
2. Are the donees authorised to act individually or jointly, if there are more than one donee appointed?
3. Would the donee(s) have power over the donor’s personal welfare and/or property and affairs as listed:

The LPA can be amended any time as long as the donor has the mental capacity to do so, said Ang. “However, there are circumstances in which a donee may become incapable of acting as one, so a donor should review his LPA regularly.” These circumstances, according to the MSF website, include the donee becoming bankrupt, the donee’s death or the donee lacking the mental capacity to act as one.

Other than an LPA, Shen Kiat further advised preparing “a simple schedule of assets” so that caregivers, other than yourself, are aware of the resources that have been arranged prior.

How do you decide which certificate issuer to go to?

Consider the extent of power your parents want to grant the donee or donees, said Basil Tan from Estateplanningasia.com. If the points listed in the table above are adequate for your parents, they can go to whoever is the most convenient for them, he said. But if they’re looking at granting “specific and customised powers to the donees, it has to be drafted by a lawyer”, he said.

Your parents can also make the LPA with their doctors or psychiatrists if your parents are more comfortable with them – provided these medical experts are on the Office of the Public Guardian’s panel, said Ang. “If not, the donor can choose a lawyer whom he is comfortable with.”

If a lawyer is already consulted for the making of other legal documents such as wills, you can get the LPA made with said lawyer. There is no requirement to get your parents medically pre-assessed if the certificate issuer is a lawyer, said Basil, as long as “the donor understands the impact (of the decisions) and also to make sure that the LPA is not done under pressure or duress”. 

However, should the lawyer have concerns about the donor’s mental capacity, a medical assessment may be requested, said Ang. “A medical assessment may also be prudent if it is known that the family members of the donor are not on good terms and to ensure we have done our due diligence.”

What if my parents already have dementia?

According to Shen Kiat, mental capacity is not a blanket concept. “A person with mild dementia or other neurological conditions may still have sufficient mental capacity to make a function-specific decision, for example, making an LPA.”

Ang agreed: “We understand dementia has a spectrum and the donor may have moments of lucidity if the donor has mild dementia.” But if the donor’s mental capacity is in doubt, a medical report or other expert opinion may be required, said Shen Kiat.

The situation is handled differently if your parents have moderate to severe dementia – and cannot make independent decisions. For one, no LPA can be made. Two, you’ll have to go to court to appoint yourself, other family member(s) or close family friend(s) as your parents’ deputy and make decisions on your parents’ behalf, according to the MSF website. The court may also make the specific decision on your parents’ behalf.

“Making the time and effort to sort out the LPA takes much less hassle and costs less than going to the court to appoint a deputy,” said Chua.

• ADVANCE CARE PLANNING (ACP)

ACP is not a document but the process that lets your parents convey how they want to be medically treated and cared for when they lose their mental capacity. 

It can be carried out by anyone, regardless of health condition or age, according to the Singapore Legal Advice website: “It simply requires you to start an open conversation with your loved ones” and “communicate and/or document your values and wishes regarding your future medical care”.

During the session, remind your parents to appoint a nominated healthcare spokesperson (NHS) to carry out their healthcare preferences, said Ang. There can be more than one appointed NHS as long as they are at least 21 years old. They can either be a family member or a friend.

“Although the ACP is not a legal document, it is helpful to harmonise your instructions and representatives set out in the LPA,” said Shen Kiat. For instance, the donee appointed in the LPA would likely be in the best position to carry out your parents’ ACP as the NHS, he said.

It is just as prudent to bear in mind that healthcare preferences can change with time, said Shen Kiat, so it is important to review the ACP at regular intervals. “Decisions made when a person is healthy and well versus right before an important operation will vary.”

If you’re not sure how to go about it, Chua suggested checking the My Legacy website for details. “ACP does not need to be made in presence of a medical doctor. A trained ACP facilitator can initiate the discussion and later get the primary doctor to sign off the documentation,” she said. 

• ADVANCE MEDICAL DIRECTIVE (AMD)

An AMD is specifically for how a doctor may treat Mum and Dad in the event they become terminally ill or unconscious, said Ang. In other words, if your parents do not want to use any life-sustaining treatment to artificially prolong their lives should death be imminent, this is the document that will see to that.

“In the event it happens, even if the family objects, the doctor has to proceed with the AMD,” said Basil. “People sometimes associate the AMD with euthanasia. However, it is not euthanasia.”

It is also helpful to be aware that the doctors and nurses attending to your parents do not know if there is an AMD or not. “If, and only if, the situation requires life-sustaining treatment or if the patient is terminally ill, then will they check the Registrar of AMD to see if there is one,” said Basil.

An AMD can only be made through a doctor, who has to ensure that your parents are not being forced into making the document; they are not mentally disordered; and that they understand the nature and implications of making an AMD, according to the Ministry of Health website. There is no need for a lawyer’s involvement.

The form to be submitted to the Registar of AMD must be signed and witnessed by two witnesses; one of whom must be the doctor. The other witness must be 21 years or above and can be a relative or any suitable person