Caregiving evolves through several stages–it may be referenced as four or five, depending on the source – and each brings its own unique challenges, rewards and needs.
Deeper Dive
Nearly two-thirds of older adults with long-term care needs, about 65%, rely exclusively on family and friends for assistance, according to the Family Caregiver Alliance. Almost another third (30%) supplement family care with paid providers. The organization estimates that half of older adults who need long term care but lack available family caregivers will end up in a nursing home; only 7% of those with family caregivers end up institutionalized.
Stage 1: Getting started
According to Baypath Elder Services, Stage 1 Caregivers perform no activities of daily living (ADLs); devote about 3.5 hours/week to caregiving; likely to report old age as the care recipient’s main challenge (also for levels 2,3).
Caregivers — usually the spouse, adult daughter or daughter-in-law — may have slipped into the role because they are there. They started going along on medical appointments, helping manage finances, or preparing meals. Adult children may experience a sense of role reversal. Weekends may fill up doing parents’ chores — although mom or dad might insist they’re fine.
Stage 2: Involved and searching
Caregivers perform an average of four independent activities of daily living (IADLs); 0.4 ADLs; devote 9.8 hours/week to caregiving.
Caregivers start moving from reactive to proactive, as they transition into their role as primary caregiver. This could happen over many months, a year, or more. Loved ones are often resistant at this stage to hire outside help, and may be in denial about their declining abilities. Other family members and friends should be tapped to pitch in whenever possible, so the entire caring burden is not on one person. Respite care should be a consideration at this stage too.
Stage 3: Increasing intensity
Caregivers perform 4.3 IADLs;; 2.2 ADLs; devote 12 hours/week to caregiving; assist their care-recipients with prescription medication; spend 20 or more hours weekly if caring for someone with Alzheimer’s or dementia.
Caregivers frequently manage multiple disabilities and conditions, which may be accompanied by chronic pain. Use of formal caregivers, including home health aides and therapists, along with more frequent trips to the physician or hospital, become more common.
Stage 4: Being overwhelmed
Caregivers perform an average 5.2 IADLs and 2.9 ADLs, and devote 33.1 hours/week to caregiving. Despite their best efforts, the level and extent of care may not be adequate. It is often the time to consider other options, like nursing home care. Level 4-5 caregivers have reported health concerns related to caregiving. High percentage of level 4-5 caregivers make work-related adjustments.
Caregivers may be “on duty” more than 60 hours a week, including frequent middle-of-the-night disturbances due to wandering, pain, or other issues by the care recipient. Caregivers are often exhausted, and feel isolated. It is often the time to consider other options, like nursing home care.
Stage 5: Letting go
Stage 5 Caregivers perform almost six IADLs; over four ADLs; devote 87.2 hours/week to caregiving. are more likely to provide care to stroke patients. Caregivers have almost no extra time for friends/family as well as vacations, hobbies or their own social activities. They need help managing stress and finding time for themselves, report experiencing financial hardship, and are the least likely to be employed full or part-time; With the well-being of their loved ones at stake, the decision to move the older adult to institutionalized care may be made at this stage. It’s a difficult decision that caregivers must come to terms with – that often includes feelings of guilt, relief, and loneliness.
This stage of caregiving also includes resolving relationships, making sure end-of-life decisions are complete, talking openly about hospice care and death with the loved one and medical team when the time comes.
Each stage is different for every caregiver and may be condensed or stretched out over time, depending on the older adult’s health needs. However, the consistent message that comes through is for caregivers to regularly take time for themselves – for a day, a weekend, or longer – to mitigate burnout, recharge their batteries and remain healthy and able to care for their loved one.