Mary raised her children and cared for grandchildren in her two-story home for nearly 30 years. But since an osteoporosis diagnosis six months ago, it’s become difficult for Mary to travel up and down the stairs. Because her bedroom is on the second floor but the bathroom and kitchen are on the first floor, mobility issues have impacted Mary’s ability to live independently. Though family members have offered to stay over and help her, loved ones wonder if a new living arrangement may suit Mary best in the long term, especially should her condition decline. But they have some reservations because of Mary’s attachment to her home.  

Mary’s story above is hypothetical, but it likely sounds familiar to thousands of older adults and their families in New England and across the country. Families of older adults are often contending with medical diagnoses, new health needs, and the desires of the older adult balanced against care options and offerings. 

No two long-term care plans are the same. Some adults require end-of-life care or relocation to an assisted living facility; others may fare well independently for the majority of the time, but still need part-time assistance within the home. Regardless of the situation, families should have discussions and make plans early alongside their aging parents or loved ones and their health care provider. Transitioning to a long-term care solution affects emotional wellness as well as family finances, making it a particularly difficult time for everyone involved. The right resources prevent having to navigate this alone, leading to a smoother transition when the time to enact the plan finally comes. 

Initiating the conversation 

The earlier a family plans for the future, the better. One of the biggest challenges is reluctance to let go of the independence associated with living alone. For some older adults, being able to stay in their homes presents a sense of independence, security, comfort, and overall higher quality of life. According to the National Institute of Health, older people tend to spend up to 72% of their time inside their homes, making the decision about where to live a crucial one.

When initiating the long-term care conversation, caregivers should lead with compassion and empathy. Facilitating an open dialogue gives the older adult space to express their desires for the future. The best outcomes result from having the conversation gradually. 

“Planning ahead of time and ensuring that the older adult has control over their life goals is critical,” said Laura Black, vice president of population health at Point32Health. “It can be done gently over time, with members of the elder’s care team like a social worker, nurse, or primary care physician lending an objective perspective to the conversation objective. Having conversations well before there is a need can help to avoid a crisis.”

The conversation may get emotional, but impartial medical professionals provide a voice of reason. They’ll emphasize the value of planning early, which helps alleviate the concerns of the older adult and eases pressure on the family. And by starting the conversation early, the older adult will be able to have a say in their long-term care planning and communicate what their wishes are.

“There can be so much guilt associated when trying to move a loved one into a long-term care facility,” said Black. “It’s really important to have those proactive conversations, visit facilities, and try to identify ones where the individual may know people and have built in connections.”

Finding the right solution

For caregivers and older adults, it can be tough to know where to start or what resources are available when discussing long-term care options. That’s where professional care advocates come in. Care advocate programs match families with an advocate who knows the ins and outs of the health care system. For example, Wellthy, a personal support access program for eligible Tufts Health Plan and Harvard Pilgrim Health Care members, pairs families with care advocates to help navigate Medicare, coordinate meal delivery for those remaining in the home, handle a move to an elder care facility and recommend local social programs to prevent isolation. Vivicare also offers care advocates and different care management programs to support families through difficult transitions and long-term planning. 

And as Americans live longer, the likelihood of needing specialized care increases. For example, The Population Reference Bureau reported in 2020 that seven million Americans ages 65 and older had dementia. Families need care support specific to dementia more than ever, something Point32Health recognizes. Point32Health is the first health plan in the region to operationalize a dementia care coordination program. Care managers offer support, education, and information about community resources to members, colleagues, and their families.

Harold, another hypothetical example, has been struggling with cardiovascular health for years. His son and doctor both encourage him to alter his lifestyle in order to take care of this chronic condition. But Harold doesn’t believe cutting out red meat and salt-heavy foods will make a difference after reading blogs online. To ensure he’s healthy in the future, Harold’s son and doctor plan to develop communication tactics geared toward improving his well-being for the long-term and helping combat misinformation he’s received in the past. 

Caregiver resources

The discussion of long-term care planning benefits the aging adult and their caregiver. It offers time to prepare emotionally, financially, and mentally, and provides peace of mind in the knowledge that the older adult has agreed to the plan terms. This becomes especially important if that person gets to a state that does not allow them to advocate for themselves. 

The increasing number of older adults living with family members also directly indicates to employers that they should support workers with assistance options. Assistance can come in many forms, whether that be connecting employees to care advocate services, providing benefits through employer-sponsored health plans, or offering flexible scheduling and remote work options.

Picture this: An older adult begins to have a hard time with routine tasks, exhibiting changes in mood and behavior, and not knowing what day of the week or time it is. As more symptoms develop, families without a care plan may be left scrambling to find ways to keep their loved one safe and happy, including identifying the right resources and determining health care options. With a high emotional burden as well, this stress can cause issues within the family and result in an overall negative, disheartening experience. On the other hand, another family with a loved one experiencing these symptoms may have prepared long ago for this type of situation. They’ve identified the unique needs of their situation and have a care advocate on hand, leaving the family feeling more confident and supported in navigating the challenges ahead.

Watching a loved one grow older may come with challenges but long-term care planning can ease some of the stress associated with the “what ifs” of the future, so you and your family can focus on spending time with each other. Just like life, health and wellness situations cannot be entirely predicted. Should needs in the original care plan change in the future, a team of professionals, like primary care physicians and care advocates, as well as improved employee benefits, can ease stress and frustration for families navigating fraught emotional waters.

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Point32Health is a nonprofit health and wellbeing organization, guiding and empowering healthier lives for all. Bringing together over 90 years of combined expertise and the collective strengths of Harvard Pilgrim Health Care, Tufts Health Plan and our family of companies, we help our members and communities navigate the health care ecosystem through a broad range of health plan offerings and tools.