According to AARP research, 87 percent of Americans age 65 and older want to remain in their own homes or current living environment. But health conditions can decline as people age, and eventually, it may be unsafe for older adults to remain in their current living environment.
On December 13, 2018, Right at Home sponsored a webinar, “Discovering and Communicating the Need for Care,” that discussed how healthcare professionals and caregivers can communicate necessary interventions with patients’ families to improve quality of care. Presenter Dr. Diane Darby Beach received a number of questions during the webinar, and her answers are noted below.
Healthcare Professionals Communicating the Need for Care Intervention
Healthcare professionals often see that a client needs more care before the client does. If the client is unwilling to accept further assistance, working with the family may be necessary to implement interventions.
When communicating that a patient needs extra care, Dr. Beach advises healthcare professionals to validate the feelings of all family members, but solicit feedback from a family member who understands and believes that the patient needs help. It’s important to focus on improving the quality of life of the patient. Emphasize that outside or additional help that attends to the patient’s care needs will not only keep the patient safe, but also will allow family members to enjoy their relationships with their loved ones.
Q1. When healthcare professionals see that a client needs more care, but the family members are in denial about their loved one’s additional care needs, how can the healthcare professionals help the family members understand the danger of not getting more help for their loved one sooner?
A1. Repetition—relay the same message more than once. Provide multiple sources of information—mail brochures, share websites with the relevant information, and talk about the danger of their loved one living at home on their own. Be specific and give examples, like this one: “Older adults, whether they have dementia or not, have higher fall risks. If they fall and break a hip, they end up in the hospital and then in a skilled care facility or rehab. The chances of them fully recovering are slim.” Concrete examples can help family members think deeper about the situation. Talk to as many family members as possible or involve professionals from social services to call a family meeting.
Dr. Beach also has some advice for when older adults are nearing the end of a stay at a healthcare facility. “Patients may misinterpret a discharge from a hospital or rehab facility as a sign that they are ‘ready,’ but they most likely are not ready to be on their own,” Dr. Beach says. “Healthcare professionals should highly recommend to the patient to get help from family members or professional caregivers for at least a week post-discharge. Having extra help is essential to the success of transitioning home.”
Q2. When a client’s family lives at a distance and keeps hearing their older loved one say, “I’m OK and everything is great,” how can you get the family to:
- Realize that their loved one is actually failing terribly at home and can no longer live independently?
- Be involved in their loved one’s care?
A2. Suggest to the family members or long-distance caregivers to make some time for an extended visit with their older loved one. Ask them to observe their loved one for at least a 24-hour period or a weekend, so they can see for themselves the physical, mental and emotional conditions of their loved one.
Q3. What approaches can you take when a client with memory impairment declines care/assistance from the caregiver?
A3. Patients with memory issues who live in a care facility have resident rights, which means they can refuse help, refuse to participate in activities, or refuse to be groomed. Professional caregivers can keep encouraging them to do tasks and activities, or the facility can try pairing different caregivers with the resident to find one who gets along well with the resident so he/she would willingly receive help. But residents with memory issues cannot be forced or coerced into doing something.
Social Indicators That Suggest an Older Adult Needs Help
When older loved ones cut back on activities, interests and interactions with friends and become secluded, it is possible that they are experiencing changes in their physical and/or mental health.
Q4. At what age do these social indicators (mentioned above) arise?
A4. In general, social indicators start happening in the late 50s or early 60s. It depends on the person’s illness. For example, dementia isn’t usually diagnosed until a person is age 65 or older. Also, dementia isn’t normally diagnosed until a person has been symptomatic for several years, so the social indicators may have occurred early on but went unnoticed.
Q5. How can you tell the difference between “normal grieving” and clinical depression that indicates an older person needs help?
A5. Everybody grieves differently. It is normal to not want to engage in social activities in the early stages of grief. But if the older person is still not re-engaging socially six months or a year after the loss of a loved one, there may be something else happening.
Advice for Family and Professional Caregivers
Even though a senior may need more care and assistance, it’s not uncommon for them to reject help. Many seniors are resistant to the idea of giving up their autonomy and independence or taking advice from their adult children.
Q6. What can you do when both parents are resisting change? One is doing well but is in denial about the situation occurring with the other.
A6. Convincing an older adult to accept additional support and assistance can be a process that takes repeated persuasion. Including the elderly person in the conversation and decision making process is important—let them contribute to the conversation and decide under what circumstances extra care is needed. This conversation should start as early as possible, when the older loved one has the capacity to decide for themselves. It’s best to leave no ambiguity.
“Mom, what kinds of things do you think would be indicators that you might want to consider a different living situation?” “What kinds of things do you think would be signs that we should reconsider driving?” Let the older adult provide the answers—let them provide a time and place when that activity should stop. Find out who the messenger should be and put the message out there many, many times.
Q7. How do you feel about anonymously reporting someone to the Department of Motor Vehicles (DMV), which will require the person to take a driving test?
A7. The healthcare protocol is that whoever made a health diagnosis should be the person to report the information to the Department of Health and Human Services (HHS), or to the DMV. The DMV looks at a health diagnosis and decides whether the diagnosis is severe enough to warrant revocation of the driver’s license, or whether the diagnosis is not severe enough and a driving test is required. Healthcare providers can report someone to the DMV, but typically the procedure is to go through the HHS.
Q8. Is there any assistance or are there community resources for caregivers of people who have early onset Alzheimer’s? Most respite services and benefits are only available to people age 60 and over.
A8. Unfortunately, there aren’t many services and benefits for people with Alzheimer’s who are age 60 and under. You could look for free community-based resources. Nonprofit organizations like the Alzheimer’s Association or the Southern Caregiver Resource Center in California are good examples. Visit the county office of Aging and Independent Services. There may not be 24/7 care services available, but these organization can offer some support and relief to family caregivers.
Q9. The Alzheimer’s Association estimated that 16.1 million Americans are providing unpaid care for people living with Alzheimer’s disease or other forms of dementia. When caring for a loved one with dementia, family and professional caregivers often come across behavioral issues that can be hard to handle. For example, what would you do when a physically independent patient with dementia refuses to shower?
A9. Don’t argue with the person with dementia. By saying, “No, you didn’t shower—you said you did but you did not,” the person with dementia will only become agitated. Try again later, try a different time of the day, or try having another family member or friend ask the patient to take a shower.
Q10. Can you elaborate on what sundowning is? How can you prevent or deal with it?
A10. After a day of stimulation, people living with Alzheimer’s or other forms of dementia may become tired and more anxious and agitated. Sundowning refers to a group of symptoms that occur at the end of the day and can cause a variety of behaviors such as confusion and ignoring directions. Caregivers can observe what time of the day sundowning occurs and redirect patients to engage in other activities before that happens, for example, start a meal earlier or go out for a walk.
Q11. What are the best ways to help the patient when sundowning occurs, other than sedatives?
A11. Recognize the pattern—what time of day does sundowning happen? Is it at 3:30 p.m.? Is it at 4 p.m.? When you see that pattern, you can plan ahead. Rather than waiting for the patient to show sundowning behaviors at 4:30 p.m., engage the person in an activity beginning at 4:15 p.m., because once the sundowning behavior happens, it is hard to end it. The best way to help a patient who exhibits sundowning behaviors is to be proactive by engaging with the patient before the behaviors appear.
Medications may take the edge off a patient, but sometimes medications may make things worse. Try to plan something before sundowning happens, but if that still does not work, visit the psychiatrist to discuss a medication change.
Q12. How do you handle inappropriate sexual behaviors that are common in patients with dementia?
A12. It’s common for patients with dementia to approach others, including other residents in a care facility or caregivers, in a sexual way. The best way to handle it is to not get uncomfortable. If you get uncomfortable, the person with dementia is going to become more agitated. Be calm and do not overreact to the behavior. Nonchalantly redirect the patient to something else.