'Aging in Place' is the popular rallying cry in the senior community. But living at home is not so easy, either for the frail elderly or younger people with disabilities.
Interestingly enough, the reasons may have more to do with social issues than medical concerns. Today, almost everyone could receive the care they need at home, even if they suffer from multiple chronic illnesses. But the frail elderly still move to assisted living facilities or nursing homes. For many, that transition is driven by a lack of qualified caregivers, an absence of basic services such as transportation, no access to appropriate housing, and loneliness.
Let’s look at these problems one at a time.
Caregivers: Nearly two-thirds of those being cared for at home receive all of their assistance from family members and friends. But these informal caregivers are untrained, and face huge physical, emotional and financial burdens. And they burn out.
In Japan in the 1990s, it was called 'caregiver hell' and the backlash drove profound changes in the way that nation financed elder care. We prefer to imagine family caregiving as a gauzy Sunday night movie where families rebuild fractured relationships before mom dies in peace. But, in truth, things rarely turn out that way. Caregiving is hard.
A new study by The Urban Institute’s Brenda Spillman and Sharon Long finds a major link between caregiver stress and a patient’s move to a nursing home. The biggest cause: physical strain. But financial hardship and an inability to sleep play a big role as well.
Spouses of the frail elderly may suffer the most, since many face their own physical or cognitive limitations. But adult children are hardly immune, especially those who must balance jobs and kids with caring for parents. Long-distance caregivers face particular challenges. And many of the very old may have outlived both spouses and children, and now have no one to care for them.
Home health aides are a solution for some. But quality care workers are not easy to find. It is no wonder: they earn an average of less than $10-an-hour, rarely receive benefits such as health insurance and are more likely to be injured on the job than coal miners. There are many capable and loving aides out there. But there is far more demand for help than they can fill.
Lack of Services: The most important may be transportation. Something as simple as a reliable ride to the supermarket or the doctor may be the difference between staying at home and having to move. Yet, many communities are scaling back transit programs for the elderly and disabled in the face of budget problems.
Housing: You can’t live at home if you don’t have a house. And finding one is a challenge for the many seniors and disabled with low-incomes. Even if you do have a home, it may need to be renovated to accommodate a wheelchair or a walker, and that can cost more money than many seniors have. And few government programs will help. Medicaid will pay for nursing home care, and will provide limited benefits for home care. But, with rare exceptions, it doesn’t do housing.
Loneliness: Staying at home can be extremely isolating, especially for a widow or widower. Adult children may provide practical assistance, but they have their own lives and often can’t be there for simple companionship. Old friends may find it difficult to visit as they struggle with their own physical decline. For all their limitations, nursing homes and assisted living facilities at least provide activities and companionship.
There are solutions. Better training is critical for both family caregivers and paid aides, who also deserve higher pay and better benefits. Respite care, including adult day centers, gives caregivers a desperately needed break. Community-based programs can match up volunteers with those who need rides or friendly visits.
All of this costs money. We can fund some of it through a more flexible Medicaid program. But a better solution is broad-based long-term care insurance that would give families the financial resources they need to provide appropriate care to their loved ones.
We’ll never keep everyone at home. Assisted living and nursing home care may still be necessary for those with no families or those suffering from severe dementia. But if we work at it, we can postpone the transition for months or even years. It is worth trying.
Howard Gleckman, a resident fellow at the Urban Institute, is author of "Caring For Our Parents" and a frequent writer and speaker on long-term care issues.