What Happens When Lifelong Caregivers Age?

For parents of children with developmental disabilities or serious chronic conditions, caregiving is for life. This family caregiving scenario is among the most challenging, especially as caregivers age. Lifelong caregivers often live with their care recipient and continue providing care even when they themselves need support, elevating the risks to both parties.

In past generations, this role was uncommon

Families with adult care-dependent children used to house them in institutional facilities rather than care for them at home. Today, we know institutional living is not ideal, and it’s therefore less common. This leaves families entirely responsible for lifelong caregiving, which is also not ideal. There are significant gaps in support for people with disabilities and their caregivers. As caregivers age, those gaps can become dangerous for the entire family.

What are the key risks?

1. Higher risk of poverty. Many lifelong caregivers leave paid work to provide full-time care or give up more lucrative roles in favor of flexibility. As they age, long-term loss of income translates to lower retirement savings and a lower contribution to CPP. The risk of poverty for people with disabilities and lifelong caregivers in Canada is high. Housing instability, food insecurity, and inadequate medical care are all potential consequences. People with disabilities receive very low benefits that make it difficult for them to be less dependent on a family member for housing and other basic needs.
   
   
2. Physical risks. Lifelong caregivers develop their own methods for managing tasks such as bathing, dressing, pushing a wheelchair, or physiotherapy. As they age, they may not recognize that their ability to manage these jobs is diminishing. Even if they do, they often lack the support that would allow them to step back. Lifelong caregivers are at higher risk of injury if they’re unable to rely on others to step in and take on more physical tasks as they age.
   
   
3. Reduced ability to manage day-to-day life. Managing day-to-day life, such as paying bills, cleaning the house, and managing medications, can become more stressful if a caregiver begins to experience age-related chronic conditions. For example, if a caregiver is no longer able to drive, it becomes harder for both parties to attend doctor’s appointments. Lifelong caregivers can be so accustomed to taking care of others, they may struggle to acknowledge they need help, allowing unaddressed issues to build up.
   
   
4. Uncertain legacy. For many, the question of what happens after they’re gone is haunting. If no other relatives are willing or able to take on the role of caregiver, leaving a dependent behind can cause deep emotional distress. They’re not wrong to be worried. Unless the family has financial means, leaving a dependent behind in these circumstances is scary.
   
   
5. No fail-safe in place. What happens if an aging caregiver becomes seriously ill? If a caregiver requires hospitalization, their care recipient may be left without support. Or if the care recipient is unable to assist in a medical emergency, the outcome could be serious. Often, lifelong caregivers will avoid talking to others about a declining situation, due to fears they may be separated from their care recipient. A touching dramatization of this scenario is depicted in the French-Canadian TV series, Empathie, where one of the main characters refuses to seek medical care for his ill mother out of fear she would be institutionalized. Millions of Canadians are without a family doctor, making it harder for the healthcare system to spot a caregiver struggling to manage as they age.
   
   

How Can Canada Help Aging Lifelong Caregivers?

The gaps in our caregiving infrastructure are relevant to all caregivers, including the lack of a national coordinated plan, inadequate financial supports, and low recognition of the issue. For lifelong caregivers, these gaps are cumulative, and the consequences escalate.

Specific ways to better help protect aging lifelong caregivers (and as a result, their care recipients) include:

• Recognize full-time caregiving as a job, with financial compensation for those who are unable to sustain paid work due to their role.
• Invest in housing for people with disabilities to give families options that balance independent living with appropriate support.
• Increase disability benefits to give people more options.
• Develop community health protocols to monitor full-time caregivers and care recipients who may be at risk, starting well before a caregiver is in their senior years.
• Increase access to at-home care.
• Provide legacy planning and programming to families to ensure future caregivers are well-equipped to take over, and there is a plan in place to support the care recipient.
  
  

After a life of caring, facing such uncertainty is unjust by any measure. Aging caregivers deserve peace of mind knowing their loved ones will be cared for and the ability to age with dignity.