The possibility of a loved one with dementia needing treatment in the emergency department can provoke anxiety. This can be a challenge at the best of times, but COVID-19 heightens these concerns. Being prepared may help you feel more confident. Here are some tips:
What to bring
- The name and contact details of your GP/family physician if they have one. This is useful for the hospital if they need to contact the doctor for information about medical history.
- A list of all current medications the person with dementia is taking. Include dosage and frequency. Include vitamins and natural products. Ask your pharmacist if you need help with creating this list.
- If the person with dementia has an advanced care plan or advanced directive, bring a copy to the hospital. This will help the staff provide care that is aligned to the wishes of the person with dementia and their family.
- If the person with dementia uses hearing aids, glasses, or dentures, ensure they have these and the containers to store them. If possible, label the containers with the persons name. You may have been told to keep these at home to prevent them from becoming lost, but it is essential for the person with dementia to be able to see, hear, and eat while they are in the emergency department. This can help them maintain orientation and reduce distress.
- Non-slip footwear. Comfortable shoes, or hard soled slippers. They may be in the emergency department for a long time. If the patient is walking to the bathroom or moving around the department it is important to ensure safe footwear to reduce risk of falls.
Long waits should be expected in the emergency department. This is especially true during the pandemic of COVID-19. Be patient and courteous to the staff they are doing the best they can in a challenging and unprecedented time.
It is helpful to pre-pack a bag of items to keep you and the person with dementia comfortable and occupied while you wait. Place this in a front hall closet or near the door. Pre-packing this bag will reduce the stress of finding these items in an emergency
Emergency Department Comfort Kit
Here are some suggestions of what you may want to put in your bag.
- A small pad of paper and a pen for you to write down notes, questions, or instructions.
- Non-perishable snacks and bottles of water or juice boxes. Please ensure the patient doesn’t eat unless they have been given permission by the staff in the emergency department!
- Reading material, knitting project or other quiet entertainment for the caregiver
- A quiet activity the person with dementia enjoys (simple art supplies, knitting, a magazine, a photo album etc.)
- A phone charger to ensure you can keep in touch
- If you don’t have contact numbers saved in your phone, write down the names and numbers of people you want to be in touch with
- A small amount of money (in coins) for vending machines and parking
- A change of underwear and clean socks for the person living with dementia.
- A zip up sweater for the patient (the caregiver may need one too!)
- A spare toothbrush and small container of toothpaste.
- A small package of baby wipes.
- A small hand cream or moisturizer
- Lip balm
- A small container of hand sanitizer
You may also find it helpful to have:
- An eye mask to help block out light at night and encourage regular sleep patterns.
- Some noise cancelling headphones or a small MP3 device to play music over headphones.
- A large face, battery operated digital clock to assist with orientation to time of day.
Coping with distress
The noise, bright lights, constant activity and medical procedures in an emergency department can cause some people with dementia to become agitated or upset. This can be hard for a caregiver to manage. Here are some tips to help:
- Understand that the person with dementia is reacting to the situation, not deliberately being difficult.
- They may have a hard time explaining what is upsetting them. Their behaviour is a way of expressing their emotions.
- They may be experiencing untreated pain, hunger, boredom, or need to use the washroom.
- You can advocate for the person with dementia by helping the staff interpret their behavior.
- Explain to the staff what usual behavior is for the person with dementia. This is especially important if you feel their cogitative status has changed.
- If the person with dementia is allowed to eat and drink, encourage them to stay hydrated and eat on a regular basis. This can reduce distress and help maintain normal routines
- Touch and massage can be very therapeutic. If the person with dementia is distressed you may try rubbing their back, putting cream on hands or feet, or gentle massage.
- If the noise is upsetting the person with dementia, ask if there is a quieter space that you could move to. If you have music on your phone or an MP3 you could play this over headphones.
- Sometimes people with dementia will try to remove medical devices such as IV lines, catheters, and oxygen or face -masks. Here are some suggestions:
- Sometimes these devices are uncomfortable. Acknowledge the frustration and discomfort the person with dementia may be feeling
- Explain why it is important not to touch or remove these devices- you may have to do this multiple times.
- Provide an activity that keeps hands occupied
- Tell the staff if you notice the person with dementia touching or pulling on devices- they may be able to place the device more securely with tape, or reposition it to make it more comfortable.
- It is important to tell staff about the behavior as patient removal of devices can cause injury.
- For an IV: Cover the IV with a zip up sweater or other easily removable long sleeve garment.
- For an oxygen mask or nasal prongs being removed
- Ask the staff about gel or cream to keep the nose moist and reduce discomfort.
- Temporarily remove glasses as wearing these with a mask or prongs may be uncomfortable.
- If the person with dementia doesn’t want to stay in bed, ask if there is a chair they can sit in. Some departments may have special chairs to let patients rest comfortably.
- Ask if you can take the person with dementia for a walk around the department to relieve boredom.
- Know that it is not unusual for someone with dementia to be confused about why they are in the emergency department.
- The person with dementia may start feeling better after they receive pain medicine or antibiotics that start to work rapidly. They may want to leave the department if they are feeling better.
- Explain why it’s important to listen to the doctors and nurses- you may have to do this multiple times
- People with dementia are more likely to experience a condition called delirium when they are in the emergency department.
- This is a serious medical condition that doctors and nurses need to know about.
- You can reduce the risk of delirium by encouraging regular patterns of eating, drinking, sleeping and re-orienting the person with dementia if they are confused.
- If the person with dementia becomes unusually agitated, starts speaking to people who aren’t there, or reports visual hallucinations inform a member of staff as soon as possible.
- Sometimes people with delirium become very sleepy or non-responsive. If the patient becomes unusually sleepy (for example falling asleep during a conversation or meal) or can’t be woken inform a member of staff as soon as possible.
- Delirium can be a very scary experience for a person with dementia. Acknowledge that experience is real to them and reassure them they are safe.
As a caregiver it can be tiring to support someone with dementia in the emergency department. If possible, try to take turns with other caregivers to give each of you a break. If you don’t have help, make sure you look after your own needs as well as those of the person with dementia. Take breaks to eat, drink, stretch your legs and use the washrooms. Be sure to tell the staff if you are leaving the department so they can support the person with dementia and keep them safe in your absence.
During this pandemic you may not be allowed to stay with a patient when they need care in the emergency department. This is to keep everyone safe and reduce the spread of the virus. Policies vary from hospital to hospital. Your hospital may make an exception to their visitor policy in the emergency department if you explain calmly and clearly that the patient has dementia and you are their caregiver.
If you have any symptoms of COVID-19 you will not be allowed in the hospital unless you need treatment.
If you cannot be with the patient while they are in the emergency department you may want to consider:
- Sending a note with your contact details and being available by phone. This may help the staff if they need a medical history or details of the person with dementia.
- Sending a brief introductory document that gives autobiographical and other information.
- This could include;
- Usual behaviour
- Typical daily level of confusion.
- Whether the person with dementia can give an accurate medical history
- What the person with dementia finds upsetting
- What helps the person with dementia stay calm
- What works to deescalate a situation if the person with dementia is agitated
- You can download a template using one of the following links
- United Kingdom- This is me: https://www.alzheimers.org.uk/sites/default/files/2020-03/This%20is%20me%201553_0.pdf
- Canada- All about me: https://alzheimer.ca/sites/default/files/files/national/core-lit-brochures/all_about_me_a_conversation_starter_e.pdf
- This could include;
Stay safe. Be kind. We are in this together.
Written by: Dr. Courtney Genge, PhD Dementia Studies.