Navigating Long Term Care: Tips On Choosing Long Term Care Facilities From Social Gerontologists

Confronting the notion of your parents being unable to self-care may be challenging, and broaching this topic with them might seem even more daunting. Nevertheless, initiating a conversation with your parents sooner rather than later is crucial for devising a plan for potential long-term care needs. Waiting until an emergency arises may heighten emotions and limit available options to address your parents’ care requirements.

The importance of having this conversation becomes evident when considering the potential need for long-term care for your parents, which carries a substantial financial burden. The cost of professional care varies, ranging from approximately ₹25-45 K a month for a home health aide or assisted living facility to over ₹45000 a month for a private room in a skilled nursing facility, as inferred by Cost of Care Survey conducted by us. Regrettably, many individuals are ill-prepared to handle these expenses. Long-term care in India is typically not covered by regular health insurance. Consequently, a significant number of individuals in need of long-term care end up relying on the support of family or friends.

If you serve as your parents’ contingency plan, it’s essential to discuss your capacity to provide the necessary care. If you have children who rely on you for financial or caregiving support, assisting your parents may pose additional challenges but essentially a filial responsibility. Being the go-to support for your parents can have financial implications, affecting your overall budget. Acting as a caregiver often requires a significant time commitment, potentially leading to the sacrifice of a steady income.

Discussing long-term care involves more than just financial matters, and you don’t have to cover everything in a single conversation. However, it’s essential to gradually gather the following information over time.

Start by understanding where your parents would prefer to receive care. While many express a desire to remain in their own home, delve deeper into whether their current residence is equipped to meet their specific needs. Consider aspects like the accessibility of a shower and the feasibility of navigating stairs. If they are determined to receive care at home, encourage them to address any necessary improvements promptly or explore the option of downsizing to a more suitable house. More than the physical changes, the need for support systems for the care needs to be addressed.

Inquire about the circumstances under which they would be open to receiving care in a specialised facility, tailored to their specific needs—such as a memory care facility in the event of dementia. Suggest exploring available options in their community to identify acceptable choices. Emphasise that you’re seeking their input to ensure it’s their decision, not yours, regarding the location of their care. If your parents are adamant on receiving care at home, advise them to address any necessary house improvements promptly or explore the option of downsizing to a residence better suited to their needs.

Consideration should also be given to who will provide their care. If they rely on each other, gently highlight the potential challenges this may pose later in life due to physical limitations. Encourage them to develop a backup plan, such as the ability to afford a home health aide or assisted living. If you’re designated as their backup plan, discuss your capacity to provide the necessary care, keeping in mind your own financial and caregiving responsibilities, especially if you have children relying on your support.

After retiring from his position as a professor in the Department of English Literature at Jadhavpur University, Ranganath Ray opted for a nursing home during his later years. Following the loss of his wife to cancer, he decided to avoid becoming a burden to his children, who reside elsewhere. Despite facing scrutiny for his choice, Ranganath, a renowned essayist, believes that sharing life with others is preferable to solitude amidst growing disabilities.

Jayalakshmi, a 75-year-old arthritis patient confined to her bed for several years, embraces a fulfilling life without loneliness or fear, despite her daughters residing abroad. Having relocated to advantAGE Assisted Living Facility in Bangalore a year ago, her solitary room is adorned with books, predominantly of a religious nature, and essential daily items.

Despite her arthritic condition causing considerable pain, Jayalakshmi remains occupied with various activities. She expressed, “The care workers in the facility treat me like a queen, showering me with love and attention.” Having undergone knee surgery last year, she decided against hiring a nurse at home, explaining, “I can’t endure the isolation of being with just one person all day, and managing my large house is challenging. I seek a hassle-free life.”

Consequently, she made the choice to move to our Assisted Living facility, finding companionship among fellow residents. It was Jayalakshmi who persuaded her daughters residing in the US about the merits of this decision. A growing number of India’s elderly citizens now prefer residing in retirement or care homes rather than spending their later years with their children. Fortunately, advancements in telecommunications technologies, particularly social networking, have allowed them to feel more connected to their distant children.

Janardhan Pai once fretted over the nursing home staff’s impatience and lack of professionalism, initially skeptical due to negative perceptions of such facilities. However, his perspective shifted as he acclimated. “The nursing home offers me a peaceful and dependable space for my interests and socialising,” Pai remarked, emphasising the importance of hobbies and companionship for the elderly. His optimism stands out in a demographic where such engagement is uncommon.

“Similar to a child’s first day at play school, many experience panic and loneliness when brought here by their children,” remarked Sheela Jobin, Care Manager of our assisted living facility. While some adjust quickly, others take time, and a few struggle to adapt.

Over the next four decades, India’s older population is expected to surge. According to the United Nations Population Division (UN 2011), the proportion of India’s population aged 60 and above will rise from 8 percent in 2010 to 19 percent in 2050. By mid-century, this demographic is projected to reach a staggering 323 million, surpassing the total U.S. population in 2012.

Beyond the sheer numbers, underlying social factors pose a more significant concern. This shift in the share of older Indians, occurring amidst evolving family dynamics and limited old-age income support, presents various challenges in social, economic, and healthcare policies.

As more elderly individuals find themselves living without the company of their children, the necessity of nursing homes becomes increasingly crucial, according to Sheela. She notes that few willingly seek such facilities, often succumbing to social stigma or entering after persistent persuasion from immediate family. Some only consider care when their health deteriorates irreversibly. Long-term care facilities offer several advantages for elderly individuals compared to staying at home. Here are some reasons:

1. Professional Care: Long-term care facilities provide access to professional caregivers, including nurses and support staff, who are trained to address various health needs and provide assistance with daily activities.

2. Specialised Services: For individuals with specific health conditions, such as dementia or Alzheimer’s, long-term care facilities often offer specialised services and programs tailored to meet their unique requirements.

3. Safety and Accessibility: Long-term care facilities are designed to ensure the safety and accessibility of residents. This includes features like handrails, ramps, and accessible bathrooms, reducing the risk of accidents and promoting mobility.

4. Social Engagement: Facilities provide opportunities for social interaction, fostering a sense of community among residents. Social engagement is vital for mental and emotional well-being, and long-term care facilities often organise activities and events to keep residents active and connected.

5. 24/7 Support: Long-term care facilities offer round-the-clock support, ensuring that assistance is readily available whenever needed. This can be particularly important for individuals who require help with mobility, medications, or emergencies.

6. Relief for Family Caregivers: Choosing a long-term care facility can provide relief for family members who may find it challenging to meet the extensive care needs of their elderly loved ones at home. It allows family caregivers to maintain a supportive role without being overwhelmed.

7. Access to Healthcare Services: Facilities often have arrangements with healthcare providers, making it easier for residents to access medical services, therapy, and specialised treatments without the logistical challenges of arranging external appointments.

8. Structured Routine: Long-term care facilities typically follow a structured daily routine, which can be beneficial for individuals who thrive on predictability and consistency. This can contribute to a sense of stability and well-being.

While the decision between a long-term care facility and staying at home depends on individual circumstances and preferences, these factors highlight the advantages that such facilities can offer in terms of professional care, safety, social engagement, and overall quality of life for elderly individuals. We, as social gerontologists always suggest a good care home; assisted living or skilled nursing home.
Last-minute searches for care facilities often lead to chaos, as the pressure makes it challenging to distinguish between good and bad options. Sheela advises proactive planning, urging families to research suitable facilities well in advance, especially if they have aging parents.

Some facilities may resemble resorts, but a luxurious lobby doesn’t guarantee high-quality care! Evaluating your loved one’s current and future needs is crucial. Now, let’s discuss the criteria for a ‘Good Care Facility’ and simplify the process of choosing the right one. Regardless of the type of long-term care facility you seek, a few fundamental steps should guide your decision-making. Consider these steps as you narrow down your options. Initiating discussions with siblings beforehand is crucial to avoid conflicts that could adversely impact the parents. Achieving consensus early is essential, considering the emotional, physical, and economic aspects involved in the decision-making process.

1. Release the Guilt

Many children hesitate to place their parents in a care home due to feelings of guilt, as if committing a crime. It’s crucial to recognise when professional care surpasses your capabilities. Conditions like Alzheimer’s, Parkinson’s, diabetes, or sudden crises demand advanced care, potentially requiring 24/7 attention beyond what’s feasible at home. Instead of providing subpar care, overcoming stigma and guilt by acknowledging that institutionalisation might be the best option for your parent is a pragmatic approach. Prioritise your parent’s well-being over emotional concerns and proceed to find a suitable facility.

2. Initiate the Search

In today’s world, the search primarily takes place on the internet. Numerous facilities are listed online, many with their dedicated websites. While there are online guides for assisted living facilities that aid in locating units within your geographic area, they may not be exhaustive. A detailed examination of websites yields information on various aspects. Conducting some investigative work, coupled with personal recommendations, can assist in identifying a facility aligned with your family’s requirements. Following this, shortlist a few options and establish contact. Recommendations from friends and relatives often prove to be the most valuable.

3. Inquire about the Facility and Care Provided

Asking questions is essential to understanding life within the facility. Feel free to delve into details through in-person discussions, phone calls, or emails, as you aim to grasp the available care services. How frequently will your parents have access to a nurse or doctor? Can they continue seeing their family doctors? Who are the other staff members, and what qualifications do they hold? What’s the protocol for meals? How does the daily routine unfold, and how much autonomy does your loved one have regarding daily activities? Explore available activities, how personal possessions are handled, and inquire about additional services like hairdressing or trips to local stores. Don’t hesitate to ask more questions regarding care standards, hygiene, the background of the facility’s management, their dedication, staff ratios, and their training.

4. Personally Visit the Long-term Care Facility

Conducting a firsthand visit to the facility is crucial for your peace of mind. A tour provides valuable insights. Pay attention to your overall impressions. Does the facility exude safety, friendliness, and cleanliness? Assess the staff levels and their professionalism. Take note of the ambiance—does it smell and sound pleasant? Is the temperature comfortable? Observe the residents; are they generally content and engaged with their surroundings? Consider the facility’s location and its safety. Is it conveniently situated for family visits? Are there any lingering unpleasant odours? Evaluate the layout for ease of mobility. Trust your instincts during this visit.

5. Engage with Current Residents and Their Families

Given the common adjustment issues among residents, including irritability associated with old age, be mindful of potential challenges in obtaining clear responses from those with impaired mental faculties. Current residents and their families offer valuable insights into life at the long-term care facility. Inquire about potential changes they would suggest and whether there are any unresolved complaints or problems, especially those concerning staff members. Asking these questions away from staff members may encourage candid responses, though responses may vary based on the residents’ moods.

6. Interact with Facility Staff

Assess the camaraderie among staff members and their rapport with current residents. Are they visibly content and enthusiastic about their work, or do they exhibit signs of stress, rush, unfriendliness, or inadequate knowledge? If the latter is observed, investigate the reasons behind it and communicate any concerns to the facility administrator. Chronic understaffing or high turnover rates may impact your loved one’s care. Engage in a conversation before making a decision to move in or exclude the facility from your list.

7. Religious Affiliations Consideration

Many care facilities are managed by religious institutions, and understanding their ideology is crucial. Compatibility with your parent’s religious group is essential for a harmonious experience. Differing practices may become a concern later on. While exploring, inquire about the extent to which faith affiliation influences facility activities. Generally, faith-based practices are confined to specific areas, like chapels for Christians or bhajan chanting for Hindus. Despite these differences, the fundamental principles of care remain consistent. Ensure there are other residents who share the same faith and inquire about available services and pastoral support to maintain connections with one’s faith and tradition.

8. The Financial Aspect

Irrespective of future changes in long-term care financing, many families currently grapple with substantial expenses, uncertain about their duration and unable to budget effectively. In countries like India without long-term care insurance, out-of-pocket spending is prevalent. The middle class may have the means but hesitates to allocate funds for the twilight zone of their infirm loved ones. The key lies in acknowledging, especially in one’s healthy 50s, the likelihood of needing care in the future. For instance, by the age of 65, there’s a 69 percent chance of requiring some form of long-term care. Elder care is becoming increasingly costly, and this trend is expected to continue in the coming years. Prepare for higher expenses. If you acknowledge the potential need for care for yourself or your parent, carefully consider your priorities and thoroughly research the best available options in your community.

9. Your Active Role Matters

Even if your parent transitions to residential care, your role as the primary caregiver remains crucial. While day-to-day tasks may no longer be your responsibility, you become a regular visitor, liaison, and vigilant monitor. Your involvement extends to paying bills, coordinating medical appointments, engaging with healthcare practitioners, and ensuring appropriate follow-up care.

Familiarise yourself with the staff, oversee proper diet and medication administration, encourage your parent’s participation in social activities, and ensure timely attention to their needs. Acting as their voice, expressing gratitude, or requesting changes in care becomes your responsibility. This role is not just important; it’s indispensable. Your active participation makes a significant difference. While a good care home, with an average cost of 6.5 to 7.5 Lakhs per year, is often the most expensive, it offers a highly desirable setting for those with complex health needs. However, if health deteriorates beyond the basic service package, you may need to explore alternative options or be prepared for extensive out-of-pocket costs to address service gaps.

No doubt, finances play a significant role in our decision-making process. When contemplating whether to choose a long-term care home for your parents, various factors come into play. One crucial consideration is your availability as a full-time caregiver. Not only your availability, your expertise as a caregiver also matters. Furthermore, the nature and progression of the condition may necessitate more intensive medical intervention, raising the question of whether it is feasible to administer such care at their home. If your parent opts to remain at home, what support systems need to be organised, and who will oversee and monitor them? Considering all these factors, wouldn’t it be advantageous to choose a long-term care facility? The benefits of opting for a long-term care facility have been outlined at the beginning of the article.