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My hospital guide
Partnering for discharge: a communication bundle for patients with dementia and their families
Delhi Hospital
My hospital guide | Partnering for discharge: a communication bundle for patients with dementia and their families Page 2
Funding provided by the Healthcare Improvement Unit, Clinical Excellence Division, Queensland Health
My hospital guide
Being in hospital can be very stressful. The hospital is a strange environment for a person with dementia, with many staff and visitors moving around the hallways, noises and monitors. You may have a lot of questions about the care your family member or friend will receive.
The staff are available to help you understand what is happening and to support you to make decisions about hospital and discharge care.
This guide provides you with information and will help you and the hospital care team to care for you and your family or friend.
ProActive Care Post Acute
My hospital guide | Partnering for discharge: a communication bundle for patients with dementia and their families Page 3
Funding provided by the Healthcare Improvement Unit, Clinical Excellence Division, Queensland Health
Visiting
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Most wards encourage visiting with few restrictions.
We encourage family and friends to be actively involved in caring whilst in hospital. This may involve assisting with meals, going for walks, assisting with showering, if appropriate.
Family and friends are encouraged to bring in one or two small familiar objects/ photos to help create familiarity. Please ensure these are labelled.
We encourage people with dementia to dress in normal daywear during the day, if possible. Please have a clearly labelled bag for dirty clothes to be taken home to wash.
If the person with dementia is unwell, they may find it comforting to hear a familiar voice and sense your physical presence.
Consider rotating visiting among family and friends, if possible, to give others a chance to rest.
Your participation is welcomed. You will be invited to:
1. Complete the “This is Me” document (see next page)
2. Keep a journal and ask questions
3. Participate in a family meeting
My hospital guide | Partnering for discharge: a communication bundle for patients with dementia and their families Page 4
Funding provided by the Healthcare Improvement Unit, Clinical Excellence Division, Queensland Health
“This is Me”
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The nurses will ask you to help to complete a document called “This is Me.”
This information will assist the staff to know more about the person with dementia.
This document is held in the bedside patient records to assist the nurses and other staff.
Please ask your nurse for a copy so that the information can be shared.
Being in hospital can be scary and full of uncertainty and anxiety.
Families and friends need to give each other time and a safe space for expressing emotions.
The nurses can let you know if there is a private quiet room available if you need privacy.
If you have any questions or concerns, please contact:
Name: _____________________________________
Phone: _____________________________________
(Staff member who is nominated as contact person)
My hospital guide | Partnering for discharge: a communication bundle for patients with dementia and their families Page 5
Funding provided by the Healthcare Improvement Unit, Clinical Excellence Division, Queensland Health
“My Journal”
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Keeping a journal can be helpful in remembering what decisions were made and why.
It is helpful to review this on a regular basis.
The nurses will provide you with a journal, called “My Journal” that can be used to record decisions including information for after discharge. Staff will help you to keep the records.
Write down your questions or thoughts so that you remember them when the health care team meets with you. You can use the “My Journal” for recording questions.
There are no wrong questions.
It is okay to ask more questions or repeat questions if you are still unsure of the answers.
Ask questions
My hospital guide | Partnering for discharge: a communication bundle for patients with dementia and their families Page 6
Funding provided by the Healthcare Improvement Unit, Clinical Excellence Division, Queensland Health
Family meeting
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The family meeting provides an opportunity for you to share expectations of admission and discharge, including supports required. The health care team will share their early views, indicate what further information may need to be collected during the hospital stay and note that their views may change in light of new information.
Attendance can be in person or by phone. Family and friends are encouraged to attend so that goals can be collaboratively set.
Near the end of the meeting you will be invited to state your interpretation of the meeting outcomes to ensure that everyone shares the same understanding.
A meeting with the health care team will be arranged to generally occur within the first three days of admission to hospital.
My hospital guide | Partnering for discharge: a communication bundle for patients with dementia and their families Page 7
Funding provided by the Healthcare Improvement Unit, Clinical Excellence Division, Queensland Health
Look after yourself – for family and friends
Sleep
Sleep is important for clear thinking.
The most restful sleep is often in your own bed in a familiar environment.
If you experience difficulty sleeping simply having a rest may be helpful.
Exercise & nutrition
A short walk outside the hospital in the fresh air can help re-charge and regain focus.
It is important to stay hydrated and take time to have meals.
Even when you are not hungry try to have something small and nutritious such as a piece of cheese or soup.
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Informing family and friends
This can be very stressful.
Repeating information can be draining.
It helps to take notes that you can share with others. The “My Journal” can be used for keeping notes.
My hospital guide | Partnering for discharge: a communication bundle for patients with dementia and their families Page 8
Funding provided by the Healthcare Improvement Unit, Clinical Excellence Division, Queensland Health
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Spiritual support
You may experience many emotions and may even begin to ponder life’s ‘big questions’ or explore your own sense of spirituality.
If you have a spiritual or religious practice or community of support it can be helpful to continue these practices or rituals.
A multi-faith spiritual care professional is available in this hospital to support you in your spiritual and/or religious concerns.
Managing helpers
You may get people asking ‘what can I do?’
It can be helpful to share with them practical ideas on how they can help.
Some people have friends and family members assist with routine activities that still need to be done (such as; feeding a pet or watering plants).
It is important that family and friends look after
themselves.
My hospital guide | Partnering for discharge: a communication bundle for patients with dementia and their families Page 9
Funding provided by the Healthcare Improvement Unit, Clinical Excellence Division, Queensland Health
Making decisions
Sometimes people with dementia may be unable to make their own medical decisions.
Knowing if the person has already communicated their wishes or written them down can be helpful in making decisions about treatment.
The medical team will want to review the goals of care and may ask you to make some decisions about treatment options. One of the common decisions that arise is discharge destination: whether the person with dementia returns to live at home.
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The doctor will determine if there is a need to establish decision-making capacity for a specific decision such as where to go when discharged from the hospital. If so, if the person with dementia retains decision-making capacity then the decision rests with them, although they will always be encouraged to seek information and advice from the treating team and their family and friends so they can make an informed decision that is in their own best interests.
My hospital guide | Partnering for discharge: a communication bundle for patients with dementia and their families Page 10
Funding provided by the Healthcare Improvement Unit, Clinical Excellence Division, Queensland Health
Making decisions
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A substitute decision-maker is able to make decisions on behalf of an adult with impaired decision-making capacity.
Substitute decision-makers can include:
An attorney under an Enduring Power of Attorney or Advance Health Directive
An appointed guardian - appointed by the Queensland Civil and Administrative Tribunal (QCAT). This can be a private guardian (family or friend), or the Public Guardian as last resort
A statutory health attorney An informal decision-maker—from the adult's support network
(such as a family member or friend)
My hospital guide | Partnering for discharge: a communication bundle for patients with dementia and their families Page 11
Funding provided by the Healthcare Improvement Unit, Clinical Excellence Division, Queensland Health
Medical and legal terms
Administrator – a person appointed by QCAT to make financial decisions for someone.
Assisted decision-making – a person with cognitive impairment is encouraged to seek out assistance from their family, friends and medical treating team to help them make decisions for their medical and personal care.
Attorney – when an EPOA is made, the attorney is the person authorised to make decisions on another person’s behalf.
Enduring Power of Attorney (EPOA) – this document gives a person or people the authority to make specific types of decisions for someone else. The document will set out the types of decisions that the person may make (e.g. personal (including health) and financial areas) and when it starts.
Guardian – a person appointed by QCAT to make personal and health decisions for someone.
Public Guardian – QCAT can appoint the Public Guardian (independent statutory authority) to be their Guardian for personal decisions.
Public Trustee – QCAT can appoint the Public Trustee to be their Administrator for financial decisions.
Queensland Civil and Administrative Tribunal (QCAT) – the Tribunal can decide (1) if a person retains decision-making capacity; and (2) if they don’t retain capacity, they decide who is to be appointed as substitute decision-maker for that person.
Statutory Health Attorney (SHA) – by law, everyone has a SHA to make medical decisions for them, if they are too unwell to make their own. It is usually a spouse, child or carer that is SHA although there is a specific order of selection to follow. It isn’t necessary to determine who is your SHA if you have already appointed a Guardian or an Attorney to make those decisions for you.
My hospital guide | Partnering for discharge: a communication bundle for patients with dementia and their families Page 12
Funding provided by the Healthcare Improvement Unit, Clinical Excellence Division, Queensland Health
Websites for patient decision aids
Goals of care for the person with dementia: https://www.med.unc.edu/pcare/resources/goals-of-care
My health, my choices (advanced care planning): https://metrosouth.health.qld.gov.au/acp
Living with Dementia – Who do I see in Hospital?
https://www.health.qld.gov.au/__data/assets/pdf_file/0031/621787/dementia-enablement-guide-consumer.pdf
When should I move my relative into long term care? https://decisionaid.ohri.ca/AZsumm.php?ID=1044
Office of the Adult Guardian
www.justice.qld.gov.au/justice-services/guardianship/
Phone: 1300 653 187
Queensland Civil and Administrative Tribunal (QCAT)
www.qcat.qld.gov.au/
Phone: 1300 780 666
Disclaimer: Information in this brochure was accurate at the time of publication.
We would like to acknowledge the creators of “My ICU Guide” for their important contribution to “My Hospital Guide”. Please refer to www.myicuguide.ca for more information.
