What to Expect

Learn about personally caring for loved ones at home, family leave laws and wage replacement, and how to minimize caregiver stress.

In This Article:
Assessments for Senior Care ↓
Hiring Home Care Workers ↓
Informal Caregiving ↓
Family Leave Laws ↓
Caring for the Caregiver ↓

Assessments for Senior Care

A senior care needs assessment is a questionnaire focused on independence and personal care. The answers not only indicate what sort of care is needed, but also influence eligibility for insurance benefits and certain types of senior housing. Here we share standard questions and explain how they relate to activities of daily living and instrumental activities of daily living.

Activities of Daily Living (ADLs)

Senior care assessments target six areas of personal care. These are called activities of daily living or ADLs. They are:

  • Bathing/showering and oral care
  • Dressing
  • Eating
  • Getting into/out of bed or a chair
  • Using the toilet
  • Walking

While insurance policies vary, generally a person can receive benefits if two or more ADLs are challenges.

Sample Questions Assessing ADLs

  1. Is help needed getting out of bed or standing up from a chair?
  2. Is the person able to walk or use a wheelchair independently?
  3. Does the person need help with bathing, showering or oral care?
  4. Can the person dress without assistance?
  5. Does the person need help using the toilet?
  6. Can the person eat independently?

Instrumental Activities of Daily Living (IADLs)

Senior care assessments ask about instrumental activities of daily living (IADLs). IADLs are part of independent living, but unlike ADLs they aren't necessarily required everyday. Seven IADL categories are recognized by caregivers and insurance providers:

  • Communication Can use a landline or mobile phone
  • Transportation Can drive or otherwise access transportation when needed
  • Meal Preparation Prepares meals safely and stores food appropriately  
  • Shopping Purchases groceries, toiletries and clothing appropriately as needed
  • Housework Maintains a hygienic residence and launders clothes as needed
  • Managing Medications Takes medications as prescribed and manages refills
  • Managing Personal Finances Spends within budget, pays bills, balances a checkbook, and is likely to avoid financial scams

Insurance providers might consider IADLs when determining eligibility for financial benefits.

Sample Questions Assessing IADLs

  1. Can the individual use a phone without assistance?
  2. Can the person drive, arrange rides, or use public transportation?
  3. Does the person buy toothpaste, shampoo and other toiletries as needed?
  4. Does the senior prepare (or purchase) nutritious meals on a regular basis?
  5. Does he or she normally remove perishable items from the kitchen when they've expired?
  6. Does the senior generally maintain a hygienic kitchen?
  7. Does the person usually dress in clean clothes?
  8. Does the individual take medications as prescribed (dose and time of day)?
  9. Does the senior independently manage medication refills?
  10. Does the person effectively manage their finances?
  11. Is the person unusually vulnerable to con artists seeking personal data or requesting cash?

Additionally a needs assessment might consider the informal caregiver's well-being: "As a caregiver, do you personally need more support?" Oftentimes a senior's personal care needs are met by a loved one, but such caregiving isn't sustainable.  

Senior Housing With Personal Care Support

When personal care support is needed, the solution might be anything from light in-home care to comprehensive assisted living. The following types of senior living arrangements support personal care:

  • Home with informal caregiving
  • Home with professional caregiving
  • Assisted living center
  • Assisted living center with continuing care
  • Retirement community with continuing care
  • Senior cohousing

Nursing homes might also be an option. However, traditional nursing homes are meant for people who need skilled medical care. Nursing home environments sometimes feel "low energy" and restrictive to seniors in better health.

If you anticipate that skilled nursing will be needed in addition to personal care, then continuing care housing could be most convenient. Residents of continuing care assisted living centers and retirement communities could be independent, need help with ADLs, or require medical care. Some but not all continuing care communities are specially equipped for patients with Alzheimer's and other forms of dementia.

Types of Senior Housing

Assessments for Alzheimer's and Other Dementia

Hiring Home Care Workers

Two types of workers -- health aides and certified nurse assistants or CNAs -- are most appropriate for providing in-home help with personal care. They may also provide basic medical care such as blood pressure monitoring and wound care. More advanced medical care may be provided in-home by an RN or registered nurse.

As you hire a home care worker for yourself or another adult, following these guidelines can help you choose wisely.  

  1. Hire a trained caregiver. Most US states require a minimum of eight hours of training for health aides with home care agencies. Training could be provided by a community college, an online school, the Red Cross or a similar source. Just a few topics that trained caregivers might study are hydration, nutrition, incontinence management, healthy leisure activities, and how to maintain respectful communication when feeling stressed. You might also want your personal care employee to be certified in CPR.
    Certified nurses have more advanced training compared with health aides and have passed a state competency exam. In some states CNAs may legally work with patients' medications but health aides may not.
  2. Pay for a professional background check. Comprehensive background checks can verify Social Security numbers, verify education and employment reports, uncover sex offender status, reveal motor vehicle violations and much more.
    A high quality background check might cost $50 or $100 and take two to five days for completion. You could pay less by using an online service that pulls information from various sources. However, frequently the records are inaccurate. Also, it may be illegal to deny employment on the basis of an automated background check.
    Professional background check providers abide by the Fair Credit Reporting Act. The job candidate's consent is required for a search, and he or she must be provided with the results.
  3. Consider caregiver vaccinations. For the safety of the senior and the caregiver, you might insist on hiring a person who is immunized against influenza, shingles, pneumonia, tuberculosis and/or other transferable diseases. You can learn about vaccination laws for healthcare workers in your state through the Centers for Disease Control.
  4. Choose a bonded and insured caregiver. Licensed homecare agencies that are bonded and insured pay for protection in case employees are responsible for damage, theft or other financial losses to their clients.

Finally, consider experience too. A brand-new caregiver might be patient and reliable, but an experienced caregiver tends to be more skilled as well.

To learn about more advanced positions in senior care, see our Jobs page.

Informal Caregiving

While agencies specializing in professional homecare are widespread, informal caregivers (family and friends) will provide about $500 billion in unpaid work this year. The majority of that care will go to people age 50 and older. The Beatles song lyric "I get by with some help from my friends" describes much of senior care in the USA.

Here we share additional statistics about senior care, but more importantly we share useful information about paid family leave and how to avoid burnout as a senior care provider.

Informal Caregiving in the US

Here we answer questions about informal caregivers and the nature of their work.

  1. Who Are Informal Caregivers?
    Informal caregivers are unpaid family members, longtime companions, and friends of those who need personal care support and/or medical care.
    The Institute on Aging reports that more than 75 percent of informal caregivers for seniors are women. Typically the caregiver is the senior's spouse, daughter or daughter-in-law. About 65% of the people receiving care are women.
    In the US about 34 million men and women were informal caregivers for seniors at some point in 2015. Most were caring for just one person, but 15 percent were serving two adults (such as their parents). Three percent were caregivers for three or more people.
  2. What Is Informal Caregiver Work?
    Informal caregiving work typically involves keeping house, providing companionship, providing personal care support (e.g., help with eating and bathing) and providing basic medical care (such as wound care and taking vital signs).
    If paid for their work, the 34 million would have senior care job titles like these:
    • Professional homemaker
    • Home health aide
    • Registered nurse
    • Elder companion
    • Licensed practical nurse
    • Psychologist
    Sometimes family members provide the equivalent of very tailored clinical services such as skilled nurse care or psychological counseling when paying for outside help would be too costly.
  3. How Much Do Caregivers Work?
    The National Alliance for Caregiving reported in 2015 that unpaid caregivers average about 25 hours/week of caregiving work. About 25 percent spent 41 hours/week or more on senior care -- the equivalent of a full-time job.
    Unpaid labor in caregiving for adults and disabled children is valued at approximately $500 billion for 2017. The figures climbs higher every year. In 2007 the figure from the AARP Policy Institute was $375 billion, and in 2013 it was $470 billion.

Family Leave Laws (Paid & Unpaid)

Nationwide since 1993, Americans have had the right to take unpaid leave for caregiving without losing their jobs. The Family and Medical Leave Act allows a person to take up to 12 weeks from work for caregiving (or 26 weeks if the recipient of care is a military member).

However, the majority of workers cannot afford to lose income for three months. Paid family leave laws are a more practical alternative now offered in some parts of the US. Someday paid family leave could likely become the law of the land as explained below.

State Paid Family Leave Laws

Paid family leave is an option for many workers in several states and the nation's capital city. This benefit is also called wage replacement because it lets workers receive a portion of their usual workplace wages while caring for family.

The following regions have laws in place:

Each locale has different policies in terms of who is eligible, for how long, and what percentage of their wages can be replaced.

Federal Paid Family Leave Proposals

Voter support for a federal family leave law is strong across party lines for several reasons. First, it is viewed as compassionate and as promoting well-being at the individual and family levels. Additionally paid family leave of at least 10 weeks has been shown to:

  • Benefit entire local economies by preventing household poverty that would have a negative ripple effect  
  • Help employers retain employees and improve morale, thereby improving workplace productivity

Results from a 2011 study of employers in California found that, to the employers' surprise, more than 90 percent had positive reviews of the state family leave law's impact on the workplace.

You can learn more about the issue and about advocating for national paid family leave at urban.org and The Atlantic.

Caring for the Caregiver

Caregiving is stressful in many ways. The work is time-intensive and emotionally intensive, and it often involves significant physical labor such as lifting an adult or pushing a wheelchair for hours a day. Even so, caregivers aren't known for complaining. Generally a family caregiver is so emotionally invested in the senior's condition that they neglect their own well-being… sometimes to a dangerous or depressing degree. Don't let that be you! It isn't necessary.

As a caregiver you don't need to experience unmanageable stress or "reinvent the wheel" as you learn to cope. Millions of people have worked through similar situations and found healthy ways to reduce personal stress -- and even thrive! Here are some of their moves.

  1. Get respite care. Respite care is temporary senior care that relieves an unpaid caregiver of his or her duties. An example is an elder companion or home health aide stopping by for two afternoons per week.
    In many communities respite care services are available at low-cost and for free. You might find respite care through:
    Many home care agencies have grant money to help provide affordable Alzheimer's caregiver respite as well.
  2. Use an organizer. Keeping information well organized can help minimize caregiver stress. In a single book or mobile device you can store:
    • A calendar of senior care appointments
    • Senior care contacts (such as doctors, the pharmacy, a meal delivery service, and an adult day care facility)
    • A list of the senior's medications and dosages
    • Questions that arise during caregiving (so they'll be handy when you meet with your support group or other care providers)
    Using a smartphone's built-in organizer instead of a paper system might be helpful (partly for the option to have automated reminders) but be sure to backup the information in case the device gets damaged or stolen.
    You can also use a smartphone app specially designed to manage caregiving responsibilities.
  3. Keep a caregiving journal. Caregiving for any person, and especially for an elderly family member, tends to elicit a jumble of thoughts and diverse emotions. In a single morning of caregiving you might experience these feelings...
    • Joy
    • Gratefulness
    • Frustration
    • Fear
    • Sadness
    • Resentment
    • Guilt
    … and more! Getting adequate sleep is critical for processing all the input, but consciously processing your experience is also important to mental health.
    By simply expressing your caregiving day on paper, you can ease some stress. By organizing your thoughts into sentences, you'll naturally start to untangle mixed-up thoughts that would otherwise clutter your mind. And as your words collect across the pages of your caregiving journal, you'll start to identify patterns that could make the next days easier.
    Taking specific kinds of notes can be especially valuable. For example, every day you can note:
    • The day's main activities
    • A success (and factors behind the success)
    • A challenge and possible causes/solutions
    • A goal for the next day
    And last but not least:
    • A reason to feel grateful
    Consistently expressing gratitude in your caregiving journal can help boost your mood, as can expressing your gratitude to the senior and others in your life. Over time it can train you to be more aware of positivity in your life even as you struggle with serious stressors of caregiving.
  4. Exercise regularly. Taking walks or getting other cardiovascular exercise is essential for a caregiver's physical health. It matters for all the usual human reasons, plus it provides an outlet for the not-so-usual stress that might be experienced. Exercising at a brisk pace can reduce cortisol (a stress hormone) and release endorphins, naturally taking your mood to the next level.
    Your own exercise might be combined with the senior's on a regular basis. For example, depending on the senior's condition, you might be able to swim together or take long walks. Still it's advisable to have "alone time" for exercise. That way, you can work at a higher ability level. You'll also get a chance to clear your mind.
    Consider buying a quiet home treadmill if you're unable to leave the home for long daily walks at your preferred pace.
    Making a habit of walking every morning can help you mentally prepare for the day. It will also help energize you for the work to come. Conversely, walking right after work each day can help you process the day's events and calm your mind, letting you turn your attention to other matters.
  5. Join a caregiver support group. Support groups are designed to let caregivers express themselves freely. For many participants a support group might be the only place they can speak without fear of judgment or being misunderstood. Participants share problems and strategies related to caregiving and balancing their lives. Often they develop close friendships. Groups might be led by senior care professionals such as social workers, or they could be led by the group members.
    Some caregiver support groups are general. Others are disease-specific (e.g., about caregiving for prostate cancer patients or Alzheimer's patients) or meant for caregivers of sick children. Groups also form especially for different subsets of GLBT communities.
    To find a support group, you can check with local nonprofits, religious centers and public or private community centers. Another resource is ElderCare.gov.
  6. Schedule time to relax. Above we mentioned the importance of respite care. Still, even with respite care many informal care providers neglect to honestly relax. New duties loom during "time off" and the caregiver always gets lowest priority -- unless a conscious effort is made.
    Take time every month to plan in advance some activities that you find relaxing and rejuvenating. And if you feel guilty taking time away from your loved one, remember these truths:
    • You have a right to care for yourself.
    • When you are content, the care you provide can be higher quality.

What are your strategies for avoiding caregiver burnout and maintaining a balanced life? Share your story with us here.