Caring for an aging loved one can be immensely rewarding. It is generally also stressful, lonely and isolating.
There are 34.2-million Americans currently providing unpaid care to another adult over the age of 50. This care accounts for more than 85 percent of all elder care provided in the United States.
Caregivers aid with bathing, feeding, dressing, transportation, managing finances, coordinating doctors’ appointments and performing complex medical tasks. Without unpaid family caregivers, many older adults would not be able to live independently in their own homes.
The term family caregiver and “informal caregiver” are often used interchangeably to refer to non-professionals providing in-home care to a loved one. The word “family” can be misleading and excluding for many in the LGBT community. However, “family caregiving” can include chosen families, partners and close friends, not just traditional biological and legal families.
Informal caregivers of older adults are especially prone to social isolation, which is considered a growing global epidemic. One-third of Americans over 65 live alone, as do half of those over 85. As people age, they naturally tend to become more isolated. It becomes harder to move around. Hearing and vision loss make social situations challenging. Finances get tighter. Retirement offers fewer opportunities for getting out and meeting people. And friends get ill and pass away.
Studies repeatedly find social isolation to have serious physical health effects, including increased rates of hypertension, heart disease, Type 2 diabetes and dementia. The damaging effects of social isolation have been found to be equal to or greater than those caused by smoking and obesity.
Social isolation among caregivers has many causes. It is common that the person being cared for is resistant to help from anyone else but the primary caregiver. This places a great responsibility on the caregiver, especially if the person receiving care requires constant supervision (for example, if they are a fall risk, prone to wandering, need toileting assistance or are easily anxious or frightened).
Hiring a professional caregiver to help with these responsibilities can get costly quickly. Half of all caregivers report not having another unpaid, informal caregiver with whom to share the countless tasks and responsibilities.
Caregiving in isolation increases the likelihood of burnout: the physical, social, psychological, emotional and financial strain associated with caring for someone long-term. Symptoms of burnout include depression, guilt, frustration, poor sleep, withdrawal, diet changes, exhaustion, impatience and other physical health problems.
The risk factors for social isolation impact LGBT caregivers in particular and in disproportionate ways. Nine percent of informal caregivers in the United States self-identify as LGBT. LGBT people are more likely to end up as informal caregivers than their non-LGBT peers (1 in 5 versus 1 in 6). There are also currently about 1.5-million LGBT older adults in the United States who inevitably will require care — a number that is anticipated to rise to 3 million by 2030.
Compared to their non-LGBT counterparts, LGBT older adults are twice as likely to be single and to live alone and four times less likely to have children. LGBT people are thus less likely to have spouses or biological family members to take on caregiving responsibilities. Without these built-in caregiving networks, LGBT people are more likely to rely on close friends, neighbors and extended family members to contribute to caregiving.
The role of informal caregivers for LGBT elders is especially important given the barriers to receiving care from other sources. Due largely to past experiences with discrimination, LGBT older adults are five times less likely to access aging resources than non-LGBT people. Many LGBT people are reluctant to reach out for support from formal systems of care such as hospitals, homecare agencies and other social services.
As distressing as all this may sound, there are numerous online and local resources designed to help LGBT caregivers combat social isolation and avoid burnout. Supporting caregivers improves the physical and emotional health of the caregiver as well as the quality of life of the person being cared for.
Sarina Issenberg, LSW, is the program director of the CAregivers REducing Stress (CARES) program at Lutheran Settlement House. CARES offers intensive, short-term, personalized support and guidance for any person caring for a Philadelphia resident over the age of 55. Sessions focus on stress reduction, disease education, family relations, coping techniques, accessing local resources and self-care. Individual, family and group support is available. All services are free of cost.