Published Concerns Regarding People with Dementia

Exercising the right to autonomy is considered a core problem for people living with dementia. People
with dementia have a lifetime’s experience of making decisions for themselves. However, because
dementia is the kind of illness that diminishes, if not all but some, of the capacity of an individual to make
rational decisions, it had been a long concern of the society on how to deal with this incapacity.

The ability to make our own decisions and go about our daily lives according to our own values and
preferences is central to human dignity including when we are older. Everyone has the right to this
autonomy and independence. Even the Philippine constitution supports every person’s right to life, liberty
and property and this includes one’s right to their own health treatments.

However, such right couldn’t be true to people suffering with dementia. Dementia is a progressive
condition which gradually erodes a person’s capacity to make some or all decisions in their own interests.
These people lose the memory of recent events and decisions, recognition of people and places and, often,
the ability to communicate. For some types of dementia, the onset is more rapid and the changes
traumatic. During the course of the illness, individuals lose the ability to make judgements about
decisions in the way that they normally would do. They lose the skills needed for making rational, legally
binding decisions and managing finances. Their ability to assess risks diminishes to the extent that they
may put themselves or others at risk in the environment or at risk of abuse.

International and local Policy Resolution

As it is the legislations duty to fill in this incapacity, statutes had been created to assist in this
predicament. Some bills were created along the way but for years international and local laws had settled
for the concept of surrogate decision maker. A surrogate decision maker is a person or individual that had
been authorized to make decisions for patients who lack decision-making capacity including people with
dementia. This had allowed family members, partners and friends of the patient to become substitute
decision makers when it comes to how the patients are to be treated and what kind of treatment they
should receive.

This concept of surrogate decision maker had been embodied in the statues of other countries, for the
Philippines however it was finally added to our legislation through Republic Act no. 11036 on 21 June
2018. This act provides a rights-based mental health bill and a comprehensive framework for the
implementation of optimal mental healthcare in the Philippines. Included in this act is the provision for
legal representatives and supported decision-making where it allows a patient to designate a person of legal
age to act as his or her legal representative through a notarized document. This legal representative shall
‘provide the service user with support and help represent his or her interests; receive medical information
about the service user in accordance with this act; assist the service user vis-á-vis the exercise of any right
provided under this act; and be consulted with respect to any treatment or therapy received by the service
user’. If a legal representative is not chosen, other persons can act as the legal representative, including
the spouse, non-minor children and either parent by mutual consent, if the service user is a minor. A
person subject to the Act may also designate up to three persons or ‘supporters’, including the service
user's legal representative, for the purposes of supported decision-making.

Ethical dilemma

The concept of surrogate decision making had allowed healthcare providers to rely in the “surrogates” on
behalf of their patients with dementia who are deemed incapable of exercising autonomy. However even
if this concept had proved to be of significant assistance in our healthcare system, debates had now
erupted about how this concept had ignored the basic rights of patients to decide for themselves especially
that not all dementia patients fully lack cognitive and rational thinking. The debate poses that some of
these patients are still capable to some time or extent to decide for themselves and the surrogate decision-
making concept had often denied these patient’s right.

Experts claimed that the concept of surrogate decision-making standards ignores an arguably more
important issue: Who should be deciding? Empirical research demonstrates that persons with mild
dementia retain the ability to make or participate in decisions despite their acquired cognitive
impairments, and that they prefer to be actively involved in healthcare decision making. However,
persons with dementia are routinely marginalized in the decision-making process.

Studies have shown that many persons with dementia, particularly in the early stages, remain capable of
making their own healthcare decisions, which they are entitled to do under existing healthcare decision-
making law. Research has shown, however, that there is a presumption of incapacity beginning upon the
diagnosis of dementia and most of our laws provides for it. Many studies of the experience of persons
with dementia in healthcare decision making demonstrate that they are often excluded from or
marginalized in the process as healthcare providers turn to surrogate decision makers. This is despite their
remaining abilities and their desires to be recognized as agentic, self-determining persons and to be
actively involved in making or participating in decisions that affect their lives. Many persons with
dementia recognize their cognitive impairments, but also assert that they have significant remaining
capabilities. When treated as incapable and marginalized in the decision-making process, there is a
decrease in their psychological wellbeing.

Given their capabilities and preferences, questions arise about how best it would be to create another
healthcare decision-making law, other than the surrogate decision-making concept for persons with
dementia. Scholars have drawn attention to the relative lack of research on the experiences of persons
with dementia in healthcare encounters, and there has similarly been a neglect of the perspectives of
persons with dementia in legal scholarship on healthcare decision making. Instead of looking to
arguments advanced by persons without dementia, law and policymakers should instead consider
centering the perspectives and experiences of persons with dementia, as they are governed by these laws.
Doing so should increase the welfare of patients with dementia.

Now experts call for reform arguing that persons with dementia should not be prevented from making
their own healthcare decisions. Stated differently, persons with dementia should have the legal right to
make their own healthcare decisions at the time when the decisions need to be made. Ensuring this right
will require looking beyond surrogate-based healthcare decision-making law, which facilitates the
exclusion of persons with dementia from decision making.

The law says that capacity is not ‘all or nothing,’ that a diagnosis such as dementia does not mean that the
person automatically lacks capacity, and that an assessment of capacity must be made and that further
standard on how surrogate decision-making approach must be done in order to ensure the patient’s right
to autonomy will not be encroached.

References

1. Senate of the Philippines (2017) Senate Bill No. 1354: Mental Health Act of 2017. An Act Establishing a
National Mental Health Policy for the Purpose of Enhancing the Delivery of Integrated Mental Health
 Services, Promoting and Protecting Persons Utilizing Psychiatric, Neurologic and Psychosocial Health
Services, Appropriating Funds Therefore and for Other Purposes. Senate of the Philippines.
2. Samaniego R.M. (2017) The Evolution of psychiatry and mental health in the Philippines. Taiwanese
Journal of Psychiatry, 31, 101–14.
3. World Health Organization (WHO) and Department of Health (2006) WHO-AIMS Report on Mental
Health System in The Philippines. World Health Organization
4. Centers for Disease Control and Prevention, The Truth about Aging and Dementia, available at (last visited
December 6, 2019)
5. R. Dworkin, Life's Dominion: An Argument about Abortion, Euthanasia, and Individual Freedom (New
York: Vintage Books, 1994).