Respecting the wishes of people with dementia while keeping them safe

Mr Lee is a 70-year-old ex-teacher with diabetes and mild dementia. He lived alone and was hospitalised after a giddy spell due to low blood sugar caused him to fall. It likely happened because he ate erratically and would sometimes double dose on his diabetes medication on account of memory lapses.

Although he was able to navigate his neighbourhood and manage simple finances before he was hospitalised, Mr Lee frequently felt giddy and fell often at home. His only relative was a sister who visited him once a month.

It was deemed unsafe for him to continue living by himself and that he’d be better off in a nursing home.

On hearing this, Mr Lee dug in his heels and demanded immediate discharge from the hospital. He appeared to appreciate the risks of living alone but prioritised his freedom over safety.

But when asked about his long-term plans to ensure his continued well-being, Mr Lee could not give a definitive answer.

Therein lies the conundrum. If it is assessed that Mr Lee possesses adequate mental capacity to make an informed decision, should he be allowed to go home and risk further mishaps which may even threaten his life?

On the other hand, if it is determined that he lacks mental capacity, should his wishes be thwarted, and he be institutionalised against his will?

Can we seek a solution that balances respect for his wishes to live at home, and secure his safety and well-being at the same time?

Persons living with dementia face complex care and medical needs that warrant carefully considered decisions. When confronted with such decisions, these people are assessed on their mental capacity to make informed choices. Otherwise, healthcare professionals, donees or legal guardians will act in their best interests.

The problem arises when those deemed to possess mental capacity make decisions that are detrimental to themselves, while those who lack mental capacity have unwelcome decisions imposed upon them.

As we commemorate World Alzheimer’s Month in September, it is timely for us to explore how to better deal with this matter given the rapidly ageing population accompanied by the rising tide of dementia in Singapore. Moreover, Alzheimer’s Disease International has put a spotlight on attitudes towards dementia in 2024 and seeks to redress stigma and discrimination.

Thinking and being

The exercise of autonomy is founded on the presumption of free will. If someone lacks mental capacity and cannot make decisions based on free will, we can act on their behalf in their best interests.

However, research and practice both reveal that the application of the conventional four-step mental capacity test (understanding, recalling, weighing, and communicating) may be liable to bias and subjectivity, especially in borderline cases. Moreover, an “all-or-nothing” approach to mental capacity testing may not necessarily lead to the best outcomes, as seen in Mr Lee’s case.

It can be a problem if we assert that a person has the freedom to choose only if he has the mental capacity. It implies that we define personhood through the Cartesian “I think, therefore I am”. But such a definition risks being reductionist and is too narrow. Even if a person turns forgetful and is no longer his former self, he is still very much a sentient human being. Hence, his emotions and other circumstances should be taken into account.

One view regards personhood as the sum of a lifetime of interactions between the person and those around him. Even in the face of cognitive decline, it is these relationships that still define a person.

Christine Bryden, a person with dementia, once wrote, quoting a Zulu proverb: “a person is a person through others.” This notion of personhood can pave the way for persons living with dementia to maintain their autonomy and dignity, despite the march of illness.

One must recognise that an individual functions within a wider social context, which can help or hinder the expression of his personhood and freedom.

Applying this to Mr Lee, we can explore the reason why he seems unable or unwilling to articulate a reasonable option. Are there hidden fears or unmet needs that are prompting him to demand a discharge from hospital?

It is paramount to assure Mr Lee that we want to secure his best interests. That is why it is crucial to understand him, his values and his preferences. Honest conversations, undergirded by empathy and a deep appreciation of what he holds dear, can help him come to terms with his predicament and express his choice in a way most helpful to him.

Undertaking such conversations requires time and a keen desire to build rapport and trust.

Given their cognitive deficits, it would help to find ways to communicate with persons living with dementia in a manner that works for them. This can include using a familiar language or dialect and visual aids to assist them in their understanding and expression.

What do they want?

Some suffer from short-term memory loss, which makes it harder for them to process information and arrive at an informed decision.

That is why the same information may need to be repeated and re-presented to enable them to make and express a choice. If the person consistently makes the same choice with these aids, it may be construed that the choice is indeed what the person desires.

These practices are aligned with the Mental Capacity Act, where healthcare providers work with families and legal guardians to help persons living with dementia make informed decisions.

Should the person decide to live on their own despite the anticipated risks, we can employ strategies to mitigate risks and better fulfil their wishes.

Those with relatives or friends, for example, can be given daily reminders of routines, important tasks and dates.

By being familiar with their communication patterns and lifestyles, caregivers can help these persons express their decisions and preferences, and live in ways most familiar and meaningful to them.

We can also maximise their freedom by drawing on social resources and support networks.

Applying this to Mr Lee, it means he can attend a daycare centre where his meals and medications are taken care of. This arrangement could be coupled with a volunteer or neighbour delivering meals and assisting with medications in the evenings and on weekends.

His sister could also step up with more regular visits to render help, supporting him to live in the community despite dementia.

In this way, true to the words of Bryden, Mr Lee’s personhood is upheld by others where he can continue to be who he wants, through them.

This, of course, calls for a sense of compassion and justice on the part of the caregivers, healthcare providers, and society at large. Just as we value our own freedoms and independence, we need to empower persons living with dementia and their caregivers.

We acknowledge, of course, that this approach may be less relevant to persons with advanced cognitive impairments who may have challenges communicating their preferences or are too out of touch with reality to coherently express their wishes.

One must remember that this approach is premised on securing the best interests of the person living with dementia. Otherwise, it can be misused to take advantage of a vulnerable person.

In Holding one another in times of dementia, Hilde Lindemann writes about the interactions with a grandmother gripped with dementia and how simple acts of holding or caring can support narratives that have intrinsic moral value.

Persons living with dementia still experience emotions and can interact with others. Even if their cognitive abilities dwindle, those around them should empower them to live with the dignity that comes with freedom.