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Vaccinating LTCF Residents will Save Lives
But we must ensure the protection of each individual residents right to Voluntarily affirm Informed Consent or withhold consent to be vaccinated with the COVID 19 Vaccine one or both
Importance of COVID-19 Vaccination for Residents of Long-term Care Facilities | CDC
Importance of COVID-19 Vaccination for Residents of Long-term Care Facilities
Updated Dec. 13, 2020
Based on recommendations from the Advisory Committee on Immunization Practices (ACIP), an independent panel of medical and public health experts, CDC recommends residents of long-term care facilities be included among those offered the first supply of COVID-19 vaccines.
Vaccinating LTCF residents will save lives
Making sure LTCF residents can receive COVID-19 vaccination as soon as vaccines are available will help save the lives of those who are most at risk of dying from COVID-19. According to ACIP’s recommendations, long-term care facility residents include adults who reside in facilities that provide a range of services, including medical and personal care, to persons who are unable to live independently. The communal nature of LTCFs and the population served (generally older adults often with underlying medical conditions) puts facility residents at increased risk of infection and severe illness from COVID-19. By November 6, 2020, approximately 569,000–616,000 COVID-19 cases and 91,500 deaths were reported among LTCF residents and staff members in the United States, accounting for 39% of deaths nationwide.
Benefits of vaccination believed to outweigh possible risks
All COVID-19 vaccines were tested in clinical trials involving tens of thousands of people to make sure they meet safety standards and protect adults of different races, ethnicities, and ages, including adults over the age of 65. There were no serious safety concerns. The most common side effects were pain at the injection site and signs and symptoms like fever and chills. After a review of all the available information, ACIP and CDC agreed the lifesaving benefits of COVID-19 vaccination for LTCF residents outweigh the risks of possible side effects.
The safety of COVID-19 vaccines is a top priority
To help make important unapproved medical products, including vaccines, available quickly during the COVID-19 pandemic, the US Food and Drug Administration (FDA) can use what is known as an Emergency Use Authorization (EUA)external icon. Before any vaccine can be authorized for use under an EUA, FDA must determine that the vaccine’s benefits outweigh possible risks.
Once people begin receiving COVID-19 vaccinations, CDC and FDA will monitor vaccine safety closely. The United States will use existing robust systems and data sources to conduct ongoing safety monitoring. An additional layer of safety monitoring has also been added that allows CDC and FDA to evaluate COVID-19 vaccine safety almost immediately. Learn more about COVID-19 vaccine safety monitoring.
For LTCFs in particular, CDC will work with pharmacies and other partners to report possible side effects (called adverse events) to the Vaccine Adverse Event Reporting System (VAERS)external icon. Facility staff and residents’ families are encouraged to also report any adverse events immediately.
CDC will work with pharmacies and other partners to provide communication materials to help LTCFs educate residents and their families about the vaccine, answer their questions about vaccine safety and other issues, and prepare them for vaccination clinics.
For some COVID-19 vaccines, two shots are needed to provide the best protection, and the shots are given several weeks apart. Each recipient or caregiver will receive a vaccination record card to ensure they receive the correct vaccine for the second dose.
Risks and benefits will be explained to everyone offered a COVID-19 vaccination
Explaining the risks and benefits of any treatments to a patient in a way that they understand is the standard of care. In LTCFs, consent or assent for vaccination should be obtained from residents (or the person appointed to make medical decisions on their behalf) and documented in the resident’s chart per standard practice.
For LTCFs participating in the Federal Pharmacy Partnership for Long-term Care Program, pharmacies will work directly with LTCFs to ensure staff and residents who receive the vaccine also receive an EUA fact sheet before vaccination. The EUA fact sheet explains the risks and benefits of the COVID-19 vaccine they are receiving and what to expect. Each LTCF resident’s medical chart must note that this information was provided to the resident. If a resident is unable to make medical decisions due to decreased mental capacity or illness, the EUA fact sheet will be provided to the person appointed to make medical decisions on their behalf (the medical proxy or power of attorney).
COVID-19 and Nursing Home Residents' Rights (nih.gov)
Jo. of the Am. Medical Directors Association.
Nancy Kusmaul, Ph.D
J Am Med Dir Assoc. 2020 Oct; 21(10): 1389–1390.
Published online 2020 Jul 29. doi: 10.1016/j.jamda.2020.07.035
As soon as the story about the Kirkland, WA, nursing home and COVID-19 became national news, the Centers for Medicare & Medicaid Services (CMS) took swift action to protect nursing home residents.3 Their press release on March 13, 2020, characterized their directives as the most aggressive and decisive, and they certainly were. They immediately restricted all visitors, volunteers, and nonessential personnel from entering nursing homes and canceled group activities and communal dining.
Although the COVID-19 pandemic seemed urgent and the risks to nursing home residents were real, these directives superseded and countered residents' rights. One of the core resident's rights is the right to spend time with visitors of your choosing. “You have the … right: To spend private time with visitors. To have visitors at any time, as long as you wish to see them, as long as the visit does not interfere with the provision of care and privacy rights of other residents
The restriction of rights is concerning, even in the face of a global pandemic. Nursing homes are required by federal regulations to provide maximal quality of life. As defined in the federal register, §483.24, “Quality of life is a fundamental principle that applies to all care and services provided to facility residents. Each resident must receive and the facility must provide the necessary care and services to attain or maintain the highest practicable physical, mental, and psychosocial well-being, consistent with the resident's comprehensive assessment and plan of care.”5
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It is too soon to know the long-term impacts of this isolation on the mental and cognitive health of residents, but there is no doubt that physical and mental health are intertwined. Resident's rights are essential for quality of life, autonomy, and health for nursing home residents. Dr Penny Shaw, a nursing home resident in Massachusetts, has written extensively about how exercising about her rights has improved her life, and her health outcomes.6
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So where is the line? How can we keep residents safe while protecting their right to self-determination and choice? It is a difficult balance. As the country tentatively reopens, community-dwelling citizens are making their own calls on some of these things such as where is it safe to venture, with whom, and whether or not to wear a mask. So what is the different about congregate care settings, especially nursing homes? The challenge lies in the ever-present balance between individual rights and the common good and the desire to protect those in care. Nursing homes and policy makers need to consider ways to allow nursing home residents control over their visitation preferences without increasing risks to all of the residents in the nursing home.
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Many nursing home residents who are aware of the COVID-19 crisis are feeling frightened and vulnerable.9 A nursing home social worker reported that staff are also feeling frightened of the idea of additional people and chances for infection coming into facilities. Nursing homes themselves fear liability and citation. These fears should be addressed through the practice of prudent precautions. Fear should not keep residents from exercising their rights. [ This is especially true when we reach catastrophic numbers of 400-500 thousand dead which engenders a sense of loss and futility that may impair their capacity o assert their autonomy and right ot exercise Informed consent on the matter of accepting the COVID-19 Vaccine or deciding that at their stage in life and their circumstances they don’t wish to be protected by the Vaccination.VM]
The full report is Item IV at the end of this document. VM
Vaccine Information Statement | Frequently Asked Questions | VIS | CDC
Q: Are VISs “informed consent” forms?
A: No. People sometimes use the term “informed consent” loosely when referring to VISs. VISs are written to fulfill the information requirements of the National Childhood Vaccine Injury Act, not as informed consent forms. But because they cover both benefits and risks associated with vaccinations, they provide enough information that anyone reading them should be adequately informed.
Some states have informed consent laws, covering either procedural requirements (e.g., whether consent may be oral or must be written) or substantive requirements (e.g., types of information required). Check your state medical consent law to determine if there are any specific informed consent requirements relating to immunization. VISs may be used for informed consent as long as they conform to the appropriate state laws.
Q: Why is it recommended that the patient be given a copy of the VIS to take away following vaccination?
A: In addition to information about the vaccine’s risks and benefits, VISs contain information that may be useful later (e.g., information about what to do in the case of an adverse reaction, and where to find additional information about the disease or vaccine). Patients may choose not to take the VIS, but the provider should offer them the opportunity.
Q: What is the reading level of VISs?
A: Defining the readability of a VIS by a quantitative “grade level” measure can be difficult and misleading, particularly for a document in which certain long words can’t be avoided, and which is not formatted in a traditional block-text style. Applying a Flesch-Kincaid test to a VIS usually shows about a 10th grade reading level. Great care is taken to make VISs as easy to read and understand as possible, given the constraints imposed by the subject matter. When questioned, representative patients, including those considered “low-literacy,” have reported finding VISs easy to understand.
Q: Some VISs contain recommendations that are at odds with the manufacturer’s package insert. Why?
A: VISs are based on the ACIP’s recommendations, which occasionally differ from those made by the manufacturer. These differences may involve adverse events. Package inserts generally tend to include all adverse events that were temporally associated with a vaccine during clinical trials, whereas ACIP tends to recognize only those believed to be causally linked to the vaccine.
Q: Should the VISs be used for adults getting vaccines as well as for children?
A: Yes. Anyone receiving a covered vaccine should be given the appropriate VIS. VISs are worded so they may be used by adults as well as children. Exceptions are VISs for vaccines that are not licensed for adults, such as DTaP or rotavirus.
Q: The law states that VISs may be given to a child’s “legal representative.” How is “legal representative” defined? Is it different from “legal guardian?”
A: “legal representative” is a parent or other individual who is qualified under state law to consent to the immunization of a minor. It could include people other than the child’s legal guardian.
Q: Is there a requirement to verify that parents/legal representatives have actually received and reviewed the VIS?
A: Yes. The mandatory instructions for use of the VIS require providers to make a notation in the patient’s medical record or permanent office log regarding provision of the VIS. If VISs (paper or electronic) are not provided to parents/legal representatives at the time of vaccination, parents/legal representatives must acknowledge in writing (or electronically) receipt and review of the current VIS. This can be accomplished by including a written statement that the parent/legal representative received and reviewed the current edition of the VIS, with the edition date specified, on the medical consent form authorizing vaccination. The parent’s/legal representative’s signature (or electronic signature if allowed under state law) then verifies receipt/review. Where allowed under the applicable state medical consent law, such verification/consent can be accomplished through electronic means. The signed verification of receipt/review of the VIS must be retained by the clinic/health care provider in the same manner and for the same timeframe as other medical consents are required to be retained by health care providers under the state’s medical consent law.
Q: What are the acceptable methods of VIS provision to parents/legal representatives?
A: If the parent/legal representative is present at the time of vaccination, the VIS (paper or electronic) must be provided to the parent/legal representative before the child is vaccinated. If the parent/legal representative is not present, provision of the VIS prior to vaccination must be coupled with a method to verify parent/legal representative receipt of the VIS, in addition to parent/legal representative consent to vaccination in compliance with the applicable state medical consent law. Some examples of methods of VIS provision are as follows*:
- Providing a physical copy of the VIS to the parent/legal representative;
- Providing a link to the VIS in a physical letter sent to the parent/legal representative;
- Providing the VIS as an attachment or weblink contained within an email sent to the parent/legal representative.
*As noted above, if not provided directly to the parent/legal representative at the time of vaccination, the VIS must be provided prior to vaccination along with a requirement to acknowledge receipt/review of the VIS. This requirement can be accomplished by adding a written statement that the parent/legal representative received and reviewed the current edition of the VIS, with the edition date specified, on the medical consent form authorizing vaccination. Where allowed under the applicable state medical consent law, such verification/consent can be accomplished through electronic means.
Q: Our state allows parents/legal representatives to provide a single, one-time consent for vaccines that require multiple doses given over weeks or months. In this case, do we have to provide a VIS prior to every dose administered?
A: Yes. Since a child’s medical condition might change between doses, a VIS must be provided prior to administration of each dose to allow the parent to review the child’s situation and determine whether or not to withdraw consent for additional doses. However, an additional acknowledged verification of receipt/review of the VIS and consent to vaccination for the following doses is not required if a single consent for a vaccine series is authorized under the applicable state medical consent law. In that instance, the original verification of receipt/review of the VIS and consent to the vaccination series sent prior to administration of the first dose must comply with any state medical consent requirement related to providing a process through which the parent/legal representative may later withdraw consent for additional doses, if such a requirement exists.
Get the facts about COVID-19 vaccines - Mayo Clinic
Looking to get the facts about the new COVID-19 vaccines? Here's what you need to know about the different vaccines and the benefits of getting vaccinated.
Vaccines to prevent the coronavirus disease 2019 (COVID-19) are perhaps the best hope for ending the pandemic. But as the U.S. Food and Drug Administration (FDA) begins authorizing emergency use of COVID-19 vaccines, you likely have questions. Find out about the benefits of the COVID-19 vaccines, how they work, the possible side effects and the importance of continuing to take infection prevention steps.
What are the benefits of getting a COVID-19 vaccine?
COVID-19 can cause severe medical complications and lead to death in some people. There is no way to know how COVID-19 will affect you. If you get COVID-19, you could spread the disease to family, friends and others around you.
Getting a COVID-19 vaccine can help protect you by creating an antibody response in your body without your having to become sick with COVID-19.
A COVID-19 vaccine might prevent you from getting COVID-19. Or, if you get COVID-19, the vaccine might keep you from becoming seriously ill or from developing serious complications.
Getting vaccinated also might help protect people around you from COVID-19, particularly people at increased risk of severe illness from COVID-19.
What COVID-19 vaccines have been approved and how do they work?
Currently, several COVID-19 vaccines are in clinical trials. The FDA will review the results of these trials before approving COVID-19 vaccines for use. But because there is an urgent need for COVID-19 vaccines and the FDA's vaccine approval process can take months to years, the FDA will first be giving emergency use authorization to COVID-19 vaccines based on less data than is normally required. The data must show that the vaccines are safe and effective before the FDA can give emergency use authorization.
Pfizer/BioNTech vaccine
The FDA has given emergency use authorization to the Pfizer/BioNTech COVID-19 vaccine. Data has shown that the vaccine starts working soon after the first dose and has an efficacy rate of 95% seven days after the second dose. This means that about 95% of people who get the vaccine are protected from becoming seriously ill with the virus. This vaccine is for people age 16 and older. It requires two injections given 21 days apart.
Moderna vaccine
Moderna has applied for FDA emergency use authorization of its COVID-19 vaccine. Data has shown that the vaccine has an efficacy rate of 94.1%. This vaccine requires two injections given 28 days apart.
Both the Pfizer/BioNTech and the Moderna COVID-19 vaccines use messenger RNA (mRNA). Coronaviruses have a spike-like structure on their surface called an S protein. COVID-19 mRNA vaccines give cells instructions for how to make a harmless piece of an S protein. After vaccination, cells begin making the protein pieces and displaying them on cell surfaces. Your immune system will recognize that the protein doesn't belong there and begin building an immune response and making antibodies.
Can a COVID-19 vaccine give you COVID-19?
No. The COVID-19 vaccines currently being developed in the U.S. don't use the live virus that causes COVID-19.
Keep in mind that it will take a few weeks for your body to build immunity after getting a COVID-19 vaccination. As a result, it's possible that you could become infected with the virus that causes COVID-19 just before or after being vaccinated.
What are the possible side effects of a COVID-19 vaccine?
A COVID-19 vaccine can cause mild side effects, including:
- Pain, redness or swelling where the shot was given
- Fever
- Fatigue
- Headache
- Muscle pain
- Chills
- Joint pain
Most reactions happen with the first few days after vaccination and last no more than three days. If you experience side effects after getting a COVID-19 vaccine, it doesn't mean that you have COVID-19. Take time to rest and recover. If you develop a fever, stay home. However, it's not necessary to get a COVID-19 test or quarantine.
If you have a reaction that prevents you from being able to eat, sleep or work, contact your doctor. Also, contact your doctor if you have a reaction that lasts longer than three days.
Signs of an allergic reaction include hives, swelling of the face and throat, difficulty breathing, a fast heartbeat, dizziness, and weakness. If you have any of these signs, seek care immediately.
How are the COVID-19 vaccines being distributed?
Due to limited supplies, not everyone will be able to get a COVID-19 vaccine right away.
The Advisory Committee on Immunization Practices (ACIP) is a U.S. federal advisory group made up of medical and public health experts. The ACIP has recommended that in the first phase of vaccination in the U.S., COVID-19 vaccines should be given to health care personnel and adult residents of long-term care facilities. Other groups under consideration for early COVID-19 vaccination include workers in essential and critical industries, adults at high risk of severe COVID-19 due to underlying medical conditions, and adults age 65 and older.
Is there anyone who should not get a COVID-19 vaccine?
The COVID-19 vaccine is not being offered to pregnant women. This is because researchers don't know enough about how COVID-19 vaccination can affect children, pregnant women or their babies. There is also no data on the safety of COVID-19 vaccines for breastfeeding women.
The Pfizer/BioNTech vaccine is not available to children under age 16.
COVID-19 vaccination also might not be recommended for people with certain health conditions. Talk to your doctor if you have questions about getting the vaccine.
Also, if you have a history of allergic reactions, talk to your doctor before getting the vaccine. You might need to be observed for a short time after getting the vaccine.
Should I get the COVID-19 vaccine even if I've already had COVID-19?
Getting COVID-19 might offer some natural protection or immunity from reinfection with the virus that causes COVID-19. But it's not clear how long this protection lasts. Because reinfection is possible and COVID-19 can cause severe medical complications, it might be recommended that people who have already had COVID-19 get a COVID-19 vaccine.
Can I stop taking safety precautions after getting a COVID-19 vaccine?
Experts want to learn more about the protection that a COVID-19 vaccine provides and how long immunity lasts before changing safety recommendations. Factors such as how many people get vaccinated and how the virus is spreading in communities will also affect these recommendations.
In the meantime, the Centers for Disease Control and Prevention recommends following these precautions for avoiding infection with the COVID-19 virus:
- Avoid close contact. This means avoiding close contact (within about 6 feet, or 2 meters) with anyone who is sick or has symptoms. Also, keep distance between yourself and others. This is especially important if you have a higher risk of serious illness.
- Wear cloth face coverings in public places. Cloth face coverings offer extra protection in places such as the grocery store, where it's difficult to avoid close contact with others. Surgical masks may be used if available. N95 respirators should be reserved for health care providers.
- Practice good hygiene. Wash your hands often with soap and water for at least 20 seconds, or use an alcohol-based hand sanitizer that contains at least 60% alcohol. Cover your mouth and nose with your elbow or a tissue when you cough or sneeze. Throw away the used tissue. Avoid touching your eyes, nose and mouth. Avoid sharing dishes, glasses, bedding and other household items if you're sick. Clean and disinfect high-touch surfaces daily.
- Stay home if you're sick. Stay home from work, school and public areas if you're sick, unless you're going to get medical care. Avoid public transportation, taxis and ride-sharing if you're sick.
If you have a chronic medical condition and may have a higher risk of serious illness, check with your doctor about other ways to protect yourself.
Consent to coronavirus (COVID-19) vaccination | Alzheimer's Society
Consent to coronavirus (COVID-19) vaccination
People with dementia are in the current priority groups to receive any new coronavirus vaccine. Deciding whether to have the vaccine or not is a choice for those who are offered it but some people with dementia will not be able to decide for themselves.
The government produced interim guidance on who should be the first to be offered a new coronavirus vaccine. People living and working in care homes came top of the list, with people aged over 80 and other health and social care workers next.
These groups include many people living with dementia, some of whom will have lost the ability to make certain decisions. This raises important legal and ethical issues for the person and those who care for them. The Mental Capacity Act 2005 (MCA) is a crucial law in these situations.
Dementia and the Mental Capacity Act 2005
[Recommend we substitute similar legal protections in the US context. VM]
What if the person still has mental capacity to decide?
This is fairly straightforward. If a person with dementia is able to make the decision for themselves, they can choose whether to have the vaccine or not. They just need to give informed consent to do so – the same as for any medical procedure. That decision is theirs to make and must be respected, even if to others it seems unwise.
A health professional should explain how the vaccine works and how it can keep them well, together with any risks such as side-effects. Any discussion of the risks and benefits should be tailored to the person as much as possible, taking into account their age, gender, ethnicity and other health conditions. The professional must communicate with a person with dementia in the way that works best for the person and consider how quickly or reliably they are able to process the information.
When going over the risks, the health professional must explain the potential consequences of not having the vaccine clearly and simply. Even with a vaccine that is 90–95 per cent effective in reducing the risk of catching coronavirus and getting severe COVID-19, not everyone is protected. A person’s risk of COVID-19 will also depend on whether those around them have had the vaccine.
If appropriate, these risks and benefits that go beyond the individual should be explained. We don’t yet know if vaccines reduce the spread of coronavirus but, if they do, when a person is vaccinated that may help protect other residents in the care home, and so have a wider benefit. But there must be no coercion, if the person has made an informed decision to refuse.
What if the person with dementia no longer has mental capacity?
The Mental Capacity Act 2005 (MCA) says that we must always support decision-making. As well as giving people information in a way they can understand, this could mean communicating with them at their most alert time of day. The MCA also says that we must assume capacity unless we have reasonable doubt. If there is reason to doubt capacity, this needs to be assessed by an appropriate person, often their GP.
If the person does not have mental capacity to make the decision themselves then a ‘best interests’ decision about vaccination will need to be made on their behalf, although they should still be involved as much as they can. If the person with dementia has appointed an attorney for health and welfare, the attorney should discuss things with professionals but it is ultimately the attorney’s decision.
Otherwise, the decision will be made by health professionals in consultation with those closest to the person and those who know them best. The best interests decision-making must focus on the individual person and include looking at the risks and benefits of them having or not having the vaccine. If possible the decision should be made in good time before any possible vaccination and recorded in the person’s care record.
Under the MCA, the best interests decision must also take into account the person’s past and present wishes and feelings. For example, have they held strong views against vaccines? Have they always been public-spirited, thinking about the well-being of others first?
There may be indirect benefits to the person from vaccination, such as the possible relaxation of rules about visitor contact. These might also be relevant when looking at the person’s best interests.
The care home may have an interest in all its residents being vaccinated but it must not exert undue influence or seek to over-ride a best interests decision.
Where similar issues have arisen over consent to coronavirus testing, legal opinion in most cases has so far been that it is in the person’s best interests to have a test. Government guidance on testing for someone without mental capacity aligns with this. It seems likely that the same will apply to vaccination, but an individualised approach is still needed.
Where can I find out more about the benefits and risks of coronavirus vaccines?
Coronavirus vaccines have been developed a lot more quickly than normal. At present, results of trials are emerging every few weeks, sometimes more often.
As with other aspects of coronavirus, there is a lot of misinformation being spread about COVID-19 vaccines. Be especially wary of sensational stories or claims made on social media.
Further advice
You can get an independent general overview of progress with COVID-19 vaccines at websites such as Wellcome.
The British Society for Immunology has a video on YouTube about COVID-19 vaccines.
For more specific advice about your situation speak to a health professional you trust, such as a GP.
Giving the Covid-19 vaccine to someone living with dementia - Dementia UK
Giving the Covid-19 vaccine to someone living with dementia
December 14, 2020, Dementia UK
By Admiral Nurses Kerry Lyons and Mutsai Hove-Bird, as well as Admiral Nurse Professional and Practice Development Facilitator Sarah Russell.
The national Covid-19 vaccination programme began on the 8th December 2020 with the Pfizer/BioNTech vaccine. The Pfizer/BioNTech vaccine is given in two doses, 21 days apart.
The vaccine is not compulsory but is recommended, especially in the case for people at highest risk of catching the infection and of suffering serious complications if they catch it.
If you are close to the person with dementia, such as being their carer, relative or their registered Lasting Power of Attorney (LPA) for Health and Welfare, then you may want to think how you can prepare and support them to have the vaccine.
1. Getting prepared
- Give yourself some time to find out more about the Covid-19 vaccine from trusted sources. Please see here for Dementia UK FAQs on the Covid-19 vaccine.
- Ask the care provider what their vaccination programme plans are. This will give you time to discuss and address any potential questions you or the person with dementia may have.
- Consider what you already know about the person’s past wishes, choices or experiences of vaccinations; for example, do they usually have the annual flu vaccine or have they had any side effects in the past?
2. Gaining consent for the vaccine
- Before the vaccine is given, consent must be obtained from the person receiving it.
- If they are unable to give consent, then consent must be obtained via a ‘best interest’ decision (which is compliant with the Mental Capacity Act 2005).
- A ‘best interest’ decision is when someone is unable to make a decision for themselves, so the decision may have to be made for them.
- If you or a family member has registered Lasting Power of Attorney for Health and Wellbeing for the person with dementia, this means you must be consulted about any health decisions, such as the vaccine, on their behalf.
- Healthcare professionals also need to consult family, friends, other professionals who know the person well, to find out what is in the person with dementia’s best interests.
- All consent has to be documented and the government has provided templates for this. Please see here for Dementia UK FAQs on the Covid-19 vaccine.
3. Fully explain, be honest and respect the person’s independence
- It’s important that the person with dementia retains their independence and feels in control, as much as possible.
- Make sure you choose a time and place that suits them.
- Keep noise and distraction to a minimum.
- Use short sentences and simple language to explain what needs to be done and why it is important.
- Give the person time to hear and ask you any questions.
- Pause between each of your sentences.
- Visual prompt cards can be used to provide further explanation as well.
- A warm and friendly tone can help to relieve any nervousness that the person with dementia may have about receiving the vaccine.
4. Choose your timing carefully
- Sometimes people with dementia can need more time to do and understand things than others. Be patient.
- If the person is experiencing heightened anxiety or distress, rebook the vaccine at a different time and consider how you can support them next time.
5. Statements that might be helpful
Some of the below statements may be helpful to support a person with dementia and help them feel more comfortable about having the vaccine:
“The injection is to protect you from the Covid-19 virus”
“The injection won’t give you the Covid-19 virus”
“Some people can get a sore arm, headache or fever after the injection”
“I would like your permission to give you the vaccine”
6. When the vaccine is given
- Find out if you can support the person with dementia, by accompanying them to have their injection. This will depend on the particular care setting and the policies they have in place.
- Make suggestions as to how to support the person with dementia, for example asking if the vaccinator can introduce themselves, especially if they are wearing a mask or visor, and reminders that the vaccine is given by an injection in their arm.
- Consider distraction techniques whilst the injection is being administered by the health care professional; this can be conversation, music, a reassuring touch or hand massage. Getting them to hold a favourite item can also bring comfort.
7. After the vaccine
- Reassure the person with dementia after the vaccine, whilst being mindful of your tone and body language.
- You could offer a drink afterwards, or do a favourite activity of theirs, or rest if they are feeling tired.
- Check to see how they are feeling as it might have been a tiring time for them as well as for any physical side effects.
For more information about the Covid-19 vaccine see Dementia UK FAQs here
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What the Pfizer coronavirus vaccine means for your family - Dementia UK
What the Pfizer coronavirus vaccine means for your family
December 4, 2020 Dementia UK
Written by Paul Edwards, Director of Clinical Services.
What does the Pfizer coronavirus vaccine mean for you?
Like so many of us, I was really pleased to hear about the first vaccine being approved for Covid-19 this week. It is truly remarkable that we have a vaccine produced at such speed. With the opportunity of more vaccines on the way, this does feel like a turning point in tackling the pandemic. People with dementia and their families have been hit so hard by the virus and its related impact, but we can now see a way out of this chapter of our lives.
We must remember though that getting the vaccine to everyone who needs it will take a while, however people are working hard right across the UK to do just this. People with dementia, their families and many others who work within health and social care need to receive the most reliable and current information possible – we will ensure that we do just that for you.
So, what do we know so far?
The first vaccine has been approved by our UK regulator. They are called the MHRA (Medicines and Healthcare Products Regulatory Agency). This regulator is independent and approves medical and/or healthcare products based on evidence. They operate very rigorous processes and their primary focus is on safety and efficacy. For any vaccine to have been approved, it will have had to have gone through a very in-depth review by the MHRA.
What do we know in particular about the Pfizer vaccine?
We know that for a vaccine to be approved it must be safe. It has also been reported by Pfizer that the vaccine is over 90% effective in protecting against developing Covid-19. Like any vaccine or other medicine, there may be side effects for certain people. So far, we understand the reported side effects to be mild. We have been told that these side effects include: localised swelling around the injection area, headaches and a slight fever. These are very usual reactions as many of us who have had vaccinations in the past will know. There is also a robust mechanism in place for ongoing reporting of side effects; again, the same as any other new medicine.
How many doses will be required?
For the vaccine to be effective, the latest recommendations are that two doses will be required that are given 21 days apart. It will be really important for people to
make sure that they complete the course. We do not yet know how long the vaccine will be effective for, once a course is completed. We will only know this over time and through proper monitoring of the spread of Covid-19 by local public health systems in our communities.
How will the vaccine be administered?
Just like the flu vaccination, the vaccine will be delivered in the arm via a needle.
What are the plans for deployment?
At the moment we understand that there will be three routes to deploy the vaccine
- Through hubs at NHS hospitals [We have to substitute data from US Publications]
- Through large community hubs established across the UK (using large venues)
- Through local GP practices
As you can imagine, there is still quite a bit of logistical work at this stage and we will update you as and when plans are finalised. It is important to note that this particular vaccine needs to be stored at very low temperatures (-70C) and further work is underway to see how storage at this temperature can be achieved to ensure it reaches local communities.
Who are a priority for receiving the vaccine?
The government is still finalising the priority list and as soon as we have absolute clarity we will share it with you. We have been working hard to make sure groups such as care home residents, staff and families are amongst the first to be offered the vaccine alongside others, who are clinically vulnerable or providing essential health and social care services.
So where are we now?
We are awaiting clarification on a number of issues and we understand that this will take a bit of time to be finalised. While we wait, it is really important that we all follow the rules around social distancing, hand hygiene and face coverings so we continue to try to do all we can to help stop the transmission of Covid-19.
All of us at Dementia UK are committed to sharing accurate information as we receive it. For now, take really good care of yourselves and if you have any questions, please don’t hesitate to contact us.
IV Full report- Excerpts from citation #2 on page 2.
COVID-19 and Nursing Home Residents' Rights (nih.gov)
J Am Med Dir Assoc. 2020 Oct; 21(10): 1389–1390.
Published online 2020 Jul 29. doi: 10.1016/j.jamda.2020.07.035
PMCID: PMC7388752, PMID: 32883598
COVID-19 and Nursing Home Residents' Rights
Nancy Kusmaul, PhD
To the Editor:
Prior to 1987, nursing home residents had no explicit rights. It was the Nursing Home Reform Act that brought a bill of rights for residents out of recognition of the steep power imbalance between residents and staff,1 and the development of learned helplessness by those who live in such settings.2 Born from a time when nursing homes residents were subject to physical restraints and sedation, these rights sought to give residents greater control over daily routines and social interactions.2 Could COVID-19 be sending residents' rights back to those times?
As soon as the story about the Kirkland, WA, nursing home and COVID-19 became national news, the Centers for Medicare & Medicaid Services (CMS) took swift action to protect nursing home residents.3 Their press release on March 13, 2020, characterized their directives as the most aggressive and decisive, and they certainly were. They immediately restricted all visitors, volunteers, and nonessential personnel from entering nursing homes and canceled group activities and communal dining.
Although the COVID-19 pandemic seemed urgent and the risks to nursing home residents were real, these directives superseded and countered residents' rights. One of the core resident's rights is the right to spend time with visitors of your choosing. “You have the … right: To spend private time with visitors. To have visitors at any time, as long as you wish to see them, as long as the visit does not interfere with the provision of care and privacy rights of other residents.”4
The restriction of rights is concerning, even in the face of a global pandemic. Nursing homes are required by federal regulations to provide maximal quality of life. As defined in the federal register, §483.24, “Quality of life is a fundamental principle that applies to all care and services provided to facility residents. Each resident must receive and the facility must provide the necessary care and services to attain or maintain the highest practicable physical, mental, and psychosocial well-being, consistent with the resident's comprehensive assessment and plan of care.”5
How can residents maintain the highest practicable mental and psychosocial well-being when they are not able to connect with other human beings, including loved ones? CMS made exceptions for “compassionate cases,” which were left to the nursing homes' discretion.3 The example they gave was for end-of-life situations.3 But what about the mental health effects of being cut off from spouses and children? Weren't residents more likely to become ill and die if they didn't feel like they had something to live for? As many of us have learned through this COVID-19 pandemic and the subsequent isolation at home, the absence of normal markers of daily life including connection with others can leave people feeling disoriented and disconnected. It is too soon to know the long-term impacts of this isolation on the mental and cognitive health of residents, but there is no doubt that physical and mental health are intertwined. Resident's rights are essential for quality of life, autonomy, and health for nursing home residents. Dr Penny Shaw, a nursing home resident in Massachusetts, has written extensively about how exercising about her rights has improved her life, and her health outcomes.6
So where is the line? How can we keep residents safe while protecting their right to self-determination and choice? It is a difficult balance. As the country tentatively reopens, community-dwelling citizens are making their own calls on some of these things such as where is it safe to venture, with whom, and whether or not to wear a mask. So, what is the different about congregate care settings, especially nursing homes? The challenge lies in the ever-present balance between individual rights and the common good and the desire to protect those in care. Nursing homes and policy makers need to consider ways to allow nursing home residents control over their visitation preferences without increasing risks to all of the residents in the nursing home. Guidelines are beginning to be developed to allow nursing homes to reopen to visitors, and we can look to these guidelines for recommendations to increase safety and improve choice. Recommendations for safer reopening are outlined in Table 1 .
Table 1
Visitation Recommendations
Visit practices |
|
Facility practices |
I will also add that if the facility as a whole has not reopened to visitors, consider cohorting residents who are interacting with the outside world from residents who are remaining isolated.
Many nursing home residents who are aware of the COVID-19 crisis are feeling frightened and vulnerable.9 A nursing home social worker reported that staff are also feeling frightened of the idea of additional people and chances for infection coming into facilities. Nursing homes themselves fear liability and citation. These fears should be addressed through the practice of prudent precautions. Fear should not keep residents from exercising their rights.