In the U.S., 70 percent of those diagnosed with Alzheimer’s are cared for at home, creating a stressful balancing act for family members. Care needs differ dramatically, shaped by the course of the loved one’s disease, as Alzheimer’s affects people differently. The caregiver’s personal situation adds another complication. Is the caregiver nearby or across the country? Is the caregiver an elderly spouse, who also may need assistance, or an adult child who must report to a job each day or, as a homemaker, is pulled in many directions?
Regardless of the circumstances, the situation is likely to be emotionally and physically draining. So family caregivers should be attuned their own needs, as well as those of their loved one, in order to provide for them in a sustainable manner. That means finding ways to share the responsibility. Calling on family or friends to stay with the individual while they take a personal time out. Exploring local respite services. Arranging for the individual to participate in social activities at a nearby adult day center. Or, if more assistance is needed, hiring a home care aide.
Research indicates that an elderly spouse often resists outside assistance for up to a year too long, often threatening their own health. Sometimes they resist the loss of privacy that would result if someone new were to regularly spend time in their home. Often, they worry about cost. But waiting too long can force them to make decisions in the midst of a crisis, when options are likely to be more limited.
The costs of in-home care must frequently be borne by the family. Medicare pays for such services only if a homebound individual requires medical treatment. Medicaid coverage differs by state and has strict income and asset eligibility guidelines. And while long-term care insurance (if the person needing care has coverage) may cover some or all of the expense, policy coverages differ and should be carefully researched. On the other hand, if a doctor provides documentation indicating that an individual requires assistance with at least two “activities of daily living” for at least 90 days—eating and dressing, for example—expenses can be claimed as a tax deduction.
How to Begin
Home care aides can be hired on an individual basis or through one of a growing number of agencies, and their services vary. It’s a good idea to ask for referrals from friends or health care providers. Geriatric care managers, for a fee, can be helpful in sorting through alternatives.
Licensed medical professionals providing wound care, physical therapy, injections or other treatments are, of course, more expensive. Others offer everything from “companion services” to housekeeping and meal preparation to personal care such as bathing and toileting. Most will have requirements concerning the minimum number or hours/days per week you must commit to, and some provide services on a live-in basis. Many people prefer to work through an agency so that they needn’t be concerned about tax and Social Security withholding or liability for injuries sustained on the job. Always interview potential caregivers beforehand, using a detailed list of required services as the basis for your discussion.
Resistance from the individual with Alzheimer’s can complicate this process. Their sense of pride and independence may be threatened by the possibility of having someone assist them with personal matters. It’s important to try to understand the basis for their reactions so that they can be reassured. Remember that changes to their routine can create great anxiety and that they may be experiencing confusion.
Try to craft a conversation that addresses their hot buttons in order to convince them that getting help is a positive step. You might appeal to their concerns for safety if they’ve recently suffered a fall, or you might emphasize that this new person will actually be helping you, as the family caregiver. Take an incremental approach and don’t give the impression that you’re suggesting a permanent change. At first, you may want to spend extra time onsite, as the new caregiver adjusts.
An Ongoing Relationship
It’s important for the aide and your family member to bond emotionally. Tell the helper about your loved one’s accomplishments or favorite memories, so that they can have conversations that draw them closer. You might also identify interests that your family member shares with the aide, such as religious values, gardening or music.
Successfully involving a home care aide in an individual’s daily routine is an ongoing, collaborative process. You should regularly communicate about changing needs, what’s working and what’s not. Having caregivers write up the details of each day in a notebook is a good way of staying on top of things between discussions.
Continuity of care is another big issue, and families must be prepared for turnover. Sometimes personalities simply don’t mesh. Having caregivers immediately assume a “take-charge” attitude can backfire. It may be preferable for them to ease in, being available to help but not intrusive.
Finding and retaining home care professionals who can meet the complex needs of a person with Alzheimer’s and concerned family members can be difficult. Once you think you’ve found the perfect match, circumstances may change. But it’s a challenge made more than worthwhile if it enables a loved one to remain at home.
The Alzheimer’s Association offers neighborhood support groups, and by joining one, the family caregiver can receive additional help and support.