Alzheimer’s is a neurological disease associated with forgetfulness and a progressive decline in memory and cognition. It is degenerative and affects the nerve cells in the brain.

Families often find it extremely challenging to cope with loved ones suffering from Alzheimer’s disease. Many struggle with understanding and adhering to the appropriate social etiquette when interacting with these patients.

Dr Raju Poudel who specialises in internal medicine and has a doctorate in neurology explains how to care for someone with Alzheimer’s and the social and moral guidelines a caregiver has to follow while looking after the patient.

Poudel is the head of the neurology department and consultant neurologist at Grande International Hospital. Additionally, he also works at Nepal Army Institute of Health Sciences’ faculty of neurology.

How is the patient’s stage of Alzheimer's determined? At what progression does it worsen in each stage?

The stage of Alzheimer’s is determined based on when the patient seeks medical evaluation. If the family is well-informed, the patient is typically brought in during the early stage when symptoms like forgetfulness, particularly in short-term memory, are just starting to manifest.

However, in our society, not everyone knows much about Alzheimer’s, so patients often seek help when forgetfulness has progressed. The worsening depends on factors like family support and when the patient seeks care.

Is it hereditary? Can it be prevented?

Alzheimer’s can run in families, but most cases occur without a clear genetic link. Approximately 10 percent of cases have a genetic link.

While there’s no foolproof method to prevent the disease, adopting a healthy lifestyle can be beneficial. Regular exercise, maintaining a healthy weight, following a proper diet, and avoiding alcohol and smoking all contribute to reducing the risk to some extent. These habits may not directly prevent Alzheimer’s, but they certainly make a difference.

What are the social etiquette guidelines for interacting with a loved one diagnosed with Alzheimer’s?

Navigating social interactions and family dynamics when a loved one is diagnosed with Alzheimer's disease requires careful consideration and understanding. It’s not just the patient who is affected, but the entire family, as caring for the patient becomes a collective effort.

It is essential to distinguish between Alzheimer’s and the general forgetfulness that accompanies old age. Educating ourselves about the disease is key to effectively supporting our loved ones.

Empathy and patience should be paramount when engaging with the patient. Providing attentive care and involving the whole family in the caregiving process is essential. It’s common for patients to repeat questions, so responding with patience and understanding is important. Family members must resist feeling annoyed and instead empathise with the patient.

What is the appropriate etiquette when you meet someone with Alzheimer’s in public? To what extent should bystanders intervene?

As Alzheimer’s disease becomes more prevalent, it is increasingly common to encounter elderly individuals who may appear lost in public. In such situations, it is important to consider the appropriate public etiquette. One helpful approach is for family members to ensure the patient wears a bracelet or name tag, which can help individuals they encounter in public to assist them when the patients become disoriented.

If you come across someone with Alzheimer’s in a public setting and they seem disoriented, taking them to the nearest police station is a suitable course of action. Police stations are equipped to handle such situations effectively and can assist in reuniting the individual with their family or caregivers.

What are the ethical guidelines for using CCTV to monitor a loved one with Alzheimer's? How can we balance their privacy and dignity while ensuring their safety?

When considering the use of CCTV to monitor a loved one with Alzheimer’s, ethical guidelines must be carefully followed to balance their privacy and dignity. Obtaining consent from the individual and adhering to ethical and legal procedures is paramount. CCTV can serve as a useful modality for monitoring parents, especially when caregivers cannot be present round-the-clock.

However, it’s crucial to ensure that the footage remains private and does not extend beyond the family circle. Additionally, relying solely on CCTV is not sufficient. Patients should always have supervision; there should always be someone present at home to provide immediate assistance if required.

How can caregivers maintain their mental health while looking after someone with Alzheimer’s?

Caring for someone with Alzheimer’s can place a significant strain on caregivers’ mental health, leading to burden and burnout. It’s crucial for caregivers to prioritise their own well-being to ensure they can continue providing effective care.

One strategy is for caregivers to take regular breaks from their caregiving duties. Family members can take turns caring for the patient, implementing shift-based schedules to distribute the responsibility. Additionally, families can enlist the help of professional caregivers or family nurses when needed.

Listening to the experiences of other caregivers and providing them with emotional support and comfort is also essential. Caregivers should not neglect their own needs and should schedule regular breaks to focus on self-care activities. By prioritising their own mental health and well-being, caregivers can effectively manage the challenges of caregiving and prevent burnout.

Is travel a good way to freshen up an Alzheimer’s patient?

Frequent travel is not advisable for Alzheimer’s patients as it can disrupt their sense of familiarity and lead to disorientation and delirium. It’s essential to provide care for patients in a familiar environment where they can easily locate their surroundings, including their bedroom, kitchen, and bathroom.

Changing the environment or caregivers too often can exacerbate the progression of the disease and increase the likelihood of delirium. Alzheimer’s patients are particularly susceptible to delirium, which can worsen their mental health and lead to hallucinations and delusions.

When patients are kept in a hospital setting for extended periods, they may experience delirium, but returning home to a familiar environment often helps them regain stability. Therefore, families are advised to minimise transitions and maintain consistency in their caregiving approach to support the well-being of Alzheimer’s patients.

How should caregivers respond to the patient’s irrational fits of anger?

Caregivers should respond to the patient’s irrational fits of anger with understanding and compassion. It is important to avoid reacting with judgment or raising one’s voice. Instead, caregivers should respond with tenderness and love, recognising that the patient’s anger is not malicious but may stem from underlying reasons.

Reassuring the patient and approaching the situation with patience can help de-escalate the situation and provide comfort to the patient.

Is it advisable to provide specific guidance or warnings to relatives and new individuals interacting with a patient with Alzheimer's?

It’s not advisable to use the term “warning” when discussing interactions with Alzheimer’s patients, as it lacks compassion. Instead, it’s important to approach situations regarding mental health with empathy and understanding.

However, it is essential to educate relatives and new individuals about the disease and provide guidelines on how to interact with Alzheimer’s patients with patience and compassion.