Dementia Caregiver Tips: COVID-19

Find your care

The Alzheimer’s and Dementia Care Program provides ongoing care for patients with a dementia diagnosis. Call 310-319-3222 to learn more about dementia care at UCLA Health.

Topics

Difficulty Getting Caregivers to Come Into the Home

Question: I want to hire a caregiver but nobody is willing to come into my home because of the quarantine.

Answer: Although there may be limitations placed by caregiver agencies, there are still available caregivers who are able and willing to come and provide care. Please contact the Alzheimer’s Association to get recommendations for local caregiver agencies 800-272-3900.


Worried About People Coming Into the Home

Question: I am concerned about having my loved one's paid caregiver continue to provide in home care.

Answer: Dementia does not increase risk for COVID-19; however, dementia-related behaviors that result in poor hygiene, increased age and other health conditions may increase risk. The "Safer at Home" order or Social Distancing recommendations in place in California offer guidelines to increase the physical space between individuals to decreased person to person transmission of COVID-19. Therefore, it is recommended to avoid visits with family members and friends during this time.

However, daily routines are essential in the care for a person with dementia, especially if dementia-related behaviors are present. This should be considered before making the decision to postpone or continue services from a paid health care professional.

If you are receiving or plan to receive services from a paid caregiver in your home:

  • Request for permission to check the caregiver’s temperature daily prior to entering your loved one’s home. Anyone with a temperature over 100.4° F should be excluded from providing care.
  • Ask the caregiver if they have been exposed to anyone who has tested positive and if so, do not allow them into your home.
  • Contact the caregiver agency and ask them to explain their protocols to reduce the spread of COVID-19.
  • Ensure that the caregiver washes their hands upon arrival and regularly throughout their time in the home.
  • Ask the staff member to wear a mask.
  • Know that bringing anyone into your home increases the risk of spreading COVID-19 even if CDC guidance is followed. However, knowing and minimizing the risk may make it worthwhile to allow paid caregivers to help out during these challenging times.

Activities/Recreation/Exercises

Question: Now that we are all staying at home, I need activities to keep my loved one busy. What kinds of activities would you recommend?

Answer: Keeping your loved one busy and engaged in activities is a great way of spending this time together. It is important to maintain a daily routine so that you are able to plan accordingly. Here are some activities that your loved one might enjoy:

  • Dance!
  • Daily walks and stretching
  • Making a meal together
  • Baking together
  • Household chores
    • folding clothes
    • sweeping
    • washing dishes
  • Listening to music from their generation
  • Reading books or newspapers out loud
  • Discuss current events
  • Arts and crafts
    • drawing pictures
    • picture puzzles
    • coloring books
    • painting on canvas
    • scrapbook
  • Plant flowers
  • Look at picture albums together
  • Go on a short drive together

Transportation Issues

Question: Are transportation services still available and should we continue using them?

Answer: The spread of COVID-19, ‘Safer at Home’ orders and social distancing measures has impacted many aspects of all our lives. That being said, regional public transit and commercial transportation services in greater Los Angeles have continued services during this time.

Officials have advised the transportation services are only to be used by essential workers and those who need to access crucial resources (e.g. procuring groceries or medicines; going to doctor’s visit). Riders who have a confirmed positive COVID-19 test SHOULD NOT use public transportation services.

Riders are reminded to:

  1. if possible, stay home
  2. do not use transportation services if you are sick
  3. cover your coughs and sneezes with a handkerchief or tissue paper
  4. wash your hands frequently with soap and water, or use an alcohol-based hand sanitizer
  5. riders are requested to wear a face covering when using transportation services

Please see transportation below:


Diet Concerns/Compulsive Eating

Question: My loved one is overeating now that we have increased our time at home. What can I do to provide a healthier diet?

Answer: Some people with dementia may eat too much or too often. They may have forgotten that they have recently eaten or be concerned about where the next meal is coming from. If a person is overeating, they may also eat foods that aren't good for them or even things that aren't edible. They may repeatedly ask or rummage for food. This can be a stressful situation for everyone involved, especially the caregiver. While overeating typically results from boredom or forgetfulness of the last meal, sometimes it can be a manifestation of the disease itself.

For example, people with frontotemporal dementia can exhibit excessive eating and other changes to eating behavior, such as changes in dietary preference and obsession with certain foods such as sweets.

Below are some tips caregiver can use to help curb compulsive eating:

  • Ensure your loved one has something interesting and engaging to do so they do not feel bored or lonely, as compulsive eating can be related to boredom.
  • Divide the meal portions into two smaller portions and offer the second portion if the person asks for more food.
  • Fill most of the plate with salad or vegetables.
  • Leave bite-sized fruit or healthy snacks (i.e., sliced cheese, chopped bananas, orange segments or grapes) within reach for snacking.
  • Offer your loved one a drink (water, tea, or hot chocolate) instead of more food. Hydration is equally as important to maintain good nutrition.
  • On occasion, some families remove certain foods from the house and try to manage how much a person eats.
  • If your loved one eats things that aren't food, then it may help to remove these and offer healthy snacks as a distraction.

Caregiver/Patient Anxiety

Question: I worry about what will happen if my loved one with dementia gets COVID-19? What happens if I get it? Who will take care of her? Who will take care of me?

Answer: Planning for the care of your loved one with dementia can feel daunting even under the best of circumstances. Because of the highly contagious nature of COVID-19, some previously laid plans have to be temporarily reworked. Even if your loved one tests positive for COVID-19 you may still be able to care for them at home if they are asymptomatic or if their symptoms are mild. However, you will likely be at high risk for contracting the virus yourself. Note that not everyone who gets infected will fall ill, but they can expect some flu-like symptoms. If you become ill, most likely your loved one will not be able to care for you the same way you care for them. Do not hesitate to accept help from willing, able-bodied and healthy friends or family members for fear of exposing them to the virus. Consider whom you could call to help you in case you become too ill to care for your loved one and ask that person if he/she will be available. Consult your loved one’s physician if you cannot care for your loved one, as respite care may be available. Remember that help is always available and safety—yours and your loved one—should always come first.


Caregiver Stress

Question: I am the only one that takes care of my father who has Alzheimer’s. Usually is it hard, but with the restrictions because of COVID-19, I am not sure how to get through each day.

Answer: If you are the primary caregiver for your loved one with dementia and have been coping with the usual stress of caregiving, the “safer at home” mandate for COVID-19 can turn your normal routines upside down. Going out to a restaurant or taking a walk at the mall may have been enjoyable for you and your loved one with dementia. With restaurants and malls closed, getting outside for a safe outing is often restricted to walks near the home. Grocery shopping, running errands and visits from relatives are now more complicated or impossible. With disruption in routines, it is common for caregivers to feel overwhelmed and burned out. Consider talking to someone who can help you with coping strategies such as a support group or counselor. If your loved one is enrolled in the UCLA Alzheimer’s and Dementia Care Program, consider calling your Dementia Care Specialist. Additionally, the Alzheimer’s Los Angeles has a 24/7 hotline 844.HELP.ALZ (844.435.7259), please reach out. If you live outside of Los Angeles, the Alzheimer’s Association’s 24/7 hotline is 800.272.3900.


Sandwich Generation Concerns

Question: Now that we are all staying at home, I am responsible for making sure my children and parent are receiving the care and attention they need. Do you have any recommendations on how to best handle this situation?

Answer: While there is no simple way to handle this concern for everyone, it might be helpful to have your child and parent engage in similar activities at the same time (see the next question for suggestions for activities). For example, you may want to add morning and afternoon walks for both your parent and your children. Lastly, consider hiring additional (and temporary) help during this difficult time, to help you manage the care for your children and your parent.


Caregiver Burnout

Question: My Mom’s caregivers quit because of COVID-19 and I am left taking care of her all by myself. I don’t know if I can do it. Please help!

Answer: Having a paid caregiver, access to adult day care, or assistance from other family members helps with caregiving for persons with dementia. When that help suddenly becomes unavailable due to COVID-19, caregiving becomes a full-time job and your stress level can easily escalate. With limited options for socialization and the inability to leave the house, dementia-related behaviors can worsen. Caregivers are advised to maintain routines and schedules as consistently as possible. Thus, maintaining wake/sleep times, meal times and recreation activities are important. More than ever, caregivers should make an effort to reach out to friend and family by phone or video to maintain a social connection. While they may not be able to help with caregiving tasks, family and friends can provide comfort, support and reassurance. Consider establishing a routine at home: nothing too complicated, just a way to manage the day. Most support groups and educational activities that can also be helpful are available over the phone or via webinar:


Goals of Care

Question: Should I change anything on my loved one’s advance directive or POLST form because of COVID-19?

Answer: It is important to review your loved one's advance directive or Physician Orders for Life-Sustaining Treatment (POLST) form to make sure it accurately reflects their current wishes. An advance directive is a legal document that outlines end-of-life decisions as well as indicates whom should make medical decisions if your loved one is not able to at the time. They give your loved one a way to tell his/her wishes to family, friends, and health care professionals and to avoid confusion later on. POLST is a form that gives seriously-ill patients more control over their end-of-life care, including medical treatment, extraordinary measures (such as a ventilator or feeding tube) and CPR. POLST can prevent unwanted or ineffective treatments, reduce patient and family suffering, and ensure that a patient's wishes are honored.

It is important to know that the treatment for COVID-19 is primarily supportive care, which should be consistent with previously expressed wishes (e.g. CPR or no CPR; intubation or no intubation; ICU or no ICU). Some persons with dementia and their caregivers who have previously expressed preference for aggressive medical care have reconsidered and opted for less aggressive care given hospital regulations restricting access for family and visitors. But this is an individual decision.