Care and Caring for Alzheimer’s Patients in Aruba 20th Anniversary of Fundacion Alzheimer’s Aruba 

Alzheimer’s is a progressive neurological disorder affecting memory, thinking, and behavior. Alzheimer’s patients slowly lose their ability to remember things. r. The progression and symptoms can vary from person to person, but memory loss is one of the symptoms of the disease. As the disease progresses, patients often require specialized care and support. 

In Aruba, the Fundacion Alzheimer’s Aruba (F.A.A.) has been at the forefront of promoting the interests of those with Alzheimer’s. As they celebrate their 20th anniversary, it’s a good moment to reflect on the various aspects of care that these patients require.

1. Legal Care and Guardianship

There are specific criteria for an individual to be placed under guardianship. The most common reason is when a person’s mental state deteriorates, so they can’t manage their affairs responsibly. This could be due to continuous mental decline or intermittent lapses in cognitive function. In layman’s terms, it’s when someone is not “one hundred percent” mentally. An example of such an individual could be an Alzheimer’s patient who gradually loses his/her memory, sometimes even leading to heart-wrenching moments like a child being asked by their parent, “Who are you?” 

Given the medical nature of the condition and the drastic implications of guardianship, the court takes this decision seriously. A doctor’s or psychiatrist’s letter confirming the mental deficiency is typically required. Even with this documentation, the judge will question the individual to assess their state. Sometimes, the person might respond well in court but forget the entire interaction shortly after. Once the court decides on guardianship, a “curator” guardian is appointed to manage the individual’s interests. By law, the decision is announced in at least two newspapers and the official gazette, ensuring the community is informed. This public notice means that direct dealings with the person under guardianship are not valid without the curator’s involvement. The curator also liaises with banks and pension funds  to manage the individual’s finances and ensures that property transactions, like selling a house, get court approval. The guardianship system is designed to protect vulnerable individuals in the community. Without such protection, these individuals could be easily exploited, like forgetting what they did with withdrawn money or being tricked into selling valuable assets at a fraction of their worth.

While guardianship is essential for legal aspects, the individual’s daily care remains paramount. Factors like nutrition, daily care, medical attention, and a healthy living environment are crucial. Some might view guardianship as a stigma and avoid the process, but it’s in the best interest of the individual in question. Over the years, I have assisted various families in this important yet sensitive process.

2. Medical Care 

Every patient and this also applies to every Alzheimer’s patient in Aruba, has the right to receive and continue to receive medical care. This right remains intact even if they forget medical appointments or object to visiting the doctor. However, a pertinent question arises: Are doctors accommodating enough? Are they flexible with appointments and possible ad hoc cancellations from Alzheimer’s patients who perhaps forget their appointment or refuse to go to the appointment? Are they showing enough compassion and understanding? Is there an incentive to do so? I reminisce about the old days when our family doctor would come to the house and examine one of us when we were not feeling well.  In today’s world and under the AZV regime, those days are probably gone, but it could benefit some Alzheimer’s patients if such at-home doctor visits were possible.

3. Medical consent

To provide care, a doctor needs the patient’s consent, and if it concerns a minor under the age of 13, parental consent is required. A good healthcare provider must clearly explain the type of examination and treatment plan to the patient. If the patient requests, the healthcare provider must provide it in writing. This could challenge Alzheimer’s patients as they may not fully comprehend or retain the information provided. The question is, then, how to provide care in such instances. Do the doctors do what they deem best despite the patient’s inability to comprehend? Should the authorization be given by a random family member who is present? What if, for example, a daughter and a son are present and they disagree on providing the required consent? Would they ask “SIRI FLIP A COIN”? to decide? Or would they end up in court and let a judge decide? The authorization for treatments and medical treatment for those under guardianship comes from the appointed guardian, and it is the task of the guardian to ensure the patient’s health and well-being are always at the forefront. 

4. Forced Care

One of the significant challenges in Aruba is the lack of a designated center for Alzheimer’s patients. With families often unable to afford private care, the burden of care falls heavily on them. There may be a need for specialized care centers to address this. Given the current financial duress, it is unlikely that the government will be able to provide for this specialized care. How can we support families in providing the best care for their loved ones as a community? There could be an instance where, for example, a daughter wants to place the mom – who is not under guardianship – with Alzheimer’s in an elderly care home,  but the son again disagrees. Does the eldest of the son and daughter get to decide? The one that lives the closest to the mom? The one that can afford to pay for the elderly care home? Do they ask SIRI again to flip a coin? Another question is the quality of care such homes can provide Alzheimer’s patients.? How are we making sure that they are treated with dignity and respect?

5. Police Care

Alzheimer’s patients, particularly those in the advanced stages, are prone to wandering episodes, often driven by confusion or an attempt to revisit familiar places from their past. This wandering can lead them into unfamiliar territories, making them vulnerable to various risks. In these instances, the role of our police force becomes paramount. However, the effectiveness of their response hinges on their ability to recognize and understand the symptoms of Alzheimer’s.

It’s not just about identifying someone who appears lost or confused; it’s about understanding the underlying reasons for such behavior. A person with Alzheimer’s might forget their name or address and misinterpret their surroundings or the intentions of those trying to help, leading to feelings of fear or aggression. Such reactions are not signs of criminal intent but manifestations of their condition.  Given these complexities, we need to question how much training our police force, KPA,  receives in handling such situations. Compassion and empathy should be the guiding principles in their approach. Confrontation, arrest, or using force can exacerbate the confusion and fear experienced by the individual. Instead, the primary objective should be to ensure the safety of the individual, calming them down and making every effort to reunite them with their caregivers or families. I think it would benefit the KPA to collaborate with organizations like the Fundacion Alzheimer’s Aruba. Such partnerships can facilitate specialized training sessions and provide KPA with resources like emergency contact databases or quick-response protocols tailored for Alzheimer’s incidents. In doing so, we can ensure that our first responders are equipped to maintain law and order and prepared to serve and protect some of our community’s most vulnerable members.

6. Mental Health Care

One of the often overlooked aspects of Alzheimer’s disease is its profound impact on mental health. Many Alzheimer’s patients experience symptoms of depression, which can manifest as sadness, apathy, social withdrawal, and even changes in sleeping patterns. This connection between Alzheimer’s and depression is multifaceted. The disease’s progression can lead to frustration and anxiety, while the neurological changes can directly influence mood. It’s crucial to recognize that mental health care is as vital as physical care for Alzheimer’s patients. Regular mental health check-ups, counseling sessions, and therapeutic interventions – if available –  can significantly improve the quality of life for these individuals. Caregivers and family members must be educated about the signs of depression to ensure timely interventions. As a community, we should realize the importance of mental health care for Alzheimer’s patients. This can help pave the way for holistic well-being and improved patient outcomes.

7. Loved Ones Care

Caring for someone with Alzheimer’s is not just a physical and emotional challenge but also a journey that can take a toll on the mental well-being of families and loved ones. Witnessing the progressive decline of a loved one can be heart-wrenching, and the daily demands of caregiving can lead to burnout, stress, and feelings of helplessness. It’s essential to recognize that the families and loved ones of Alzheimer’s patients also need support. Offering counseling services, support groups, and respite care can give them the tools and resources they need to cope. Additionally, workshops or forums can teach them about the disease, its progression, and effective caregiving techniques. By ensuring that the support system around the patient is robust and well-equipped, we can create a nurturing environment that benefits both the patient and those who care for them.

In Conclusion

The journey with Alzheimer’s is multifaceted, touching not only the patients but also deeply affecting their families and loved ones. As a community, we must ensure that these individuals receive the care, respect, and support they deserve physically and mentally. The intertwined challenges of depression and the emotional toll on caregivers underline the need for a comprehensive approach to Alzheimer’s care. The Fundacion Alzheimer’s Aruba has been a source of hope for many, and as they celebrate their 20th anniversary, we should congratulate them for their unwavering commitment to serving the community. Their efforts, combined with our collective consciousness, can ensure holistic well-being for Alzheimer’s patients and their support systems. Their dedication inspires us to think and act more for the vulnerable, ensuring that no aspect of their journey is overlooked.

Dedication

This columns is dedicated to those with Alzheimer’s who have taught us the importance of empathy and to my great-aunt, Telma (93), who has been a symbol of love and care for many of us throughout the years. Now, as she navigates the challenges of Alzheimer’s, her vibrant green eyes still light up with recognition and memories when she remembers who we are. Even amid the fog this disease brings, those moments of clarity are a testament to the enduring power of love and connection. Her strength and grace, remind us of the importance of cherishing every moment and advocating for a world where every Alzheimer’s patient is treated with the dignity, care, and respect they deserve.