TOP 5 logoPeople with dementia or other disabilities can have difficulty communicating their needs to strangers or difficulty coping in an unfamiliar environment. Often carers may hold the key to their communication and behaviour.

TOP 5 is an opportunity for carers to voice their unique knowledge about the person they care for and for health staff to harness this expertise to inform and guide them on the specific needs of a patient.

Carers are invited to share up to five essential strategies or care tips that would assist staff in supporting the patient or client during their everyday lives or during hospital admission. This information is written onto a TOP 5 form.

The TOP 5 form can be used by multiple service providers in hospitals, aged care facilities, supported accommodation and in the community, promoting patient-centred care at a time when people with confusion and communication problems are at their most vulnerable.

  • People with dementia or other disabilities who may have difficulty with:
    • problem solving
    • planning
    • learning
    • memory
    • speech
    • communication and being understood.
  • Carers report greater satisfaction with the personalised care and support provided.
  • Staff are better equipped to meet the unique needs of the patient/client

TOP 5 can also be used to document cultural sensitivities, traditions and rituals.

You can learn about and practice your skills in listening for and writing an effective TOP 5 via the online video training provided by CCLHD.

TOP5 Auslan Video

It can be very hard for people when they’re away from home, very sick and in hospital. You and your family or carer knows what/s important to you.

It can be hard for the hospital staff because they don’t always know what you want, and don’t want. To help the staff know you better, you and your family can ask the staff to write your tips on the TOP 5 form.

There may be things that you would like hospital staff to know but you don’t want to keep telling them over and over again. You can ask staff to write this on a TOP 5 form.

You may not be able to speak for yourself because you’re too sick, your family/carers can tell the staff for you.

Think about and tell us:

  • about things that make you upset and how staff can help
  • what staff need to know about your mob and /or family relationships
  • if you have a family spokesperson for us to talk to
  • what staff can do or say to make you feel safe.

The following videos help both staff and carers to understand the process of collecting a TOP 5 and how to write the strategies containing the elements of a good TOP 5.

Sample TOP 5 – when developing the TOP 5 for Harry think about:

1. What’s the issue? Harry becomes aggressive when showering is attempted.

  • Why does it occur? It is shameful and embarrassing for him to be showered by a female nurse.
  • How do we resolve the issue? Have a male nurse shower Harry, or wait for his wife or son to visit.

2. What’s the issue? Harry is listening to everything you say, but feels uncomfortable with eye contact.

  • Why does it occur? Harry mistrusts government organisations.
  • How do we resolve the issue? Don’t try to make him look at you, but talk to him normally.

3. What’s the issue? Harry may not understand medical discussion.

  • Why does this occur? Harry gets anxious and feels uncomfortable asking questions.
  • How do we resolve the issue? Include his wife and son in all medical discussions so they can reinforce what has been said.

Harry’s TOP 5 could look like this:  

Harry's TOP 5

Adults with disability may have modified or adapted methods of communication. Many may find it hard to express their needs and this may lead to frustration and / or behaviours that are unusual or extreme. For some just telling someone that they are feeling pain may be difficult.

Parent-Carers understand what is being communicated and have over the years developed effective ways of responding to their son or daughter’s needs.

In the following video you will meet Tim’s mother, she is talking with health staff about his communication and she provides hints and tips (TOP 5 strategies) to help staff personalise their communication with Tim.

Sample TOP 5 – When developing a TOP 5 for Tim think about:

1. What’s the issue? Tim is non-verbal, and staff don’t readily understand his vocalisations does this occur?

  • Why does this occur? Tim communicates with gestures. ‘Yes’ by tapping his head, and ‘No’ by shaking his head vigorously.
  • How can we resolve this issue? Ask Tim simple questions requesting a ‘Yes’ or ‘No’ answer.

2. What’s the issue? Tim growls and staff are concerned that he may be aggressive.

  • Why does this occur? Tim growls when his ‘possessions’ are not with or around him.
  • How can we resolve this issue? Make sure that Tim has his magazine and phone with or near to him.

3. What’s the issue? Tim doesn’t understand the concept of pain, but he does experience pain.

  • Why does this occur? Tim cannot respond ‘yes’ or ‘no’ when asked about pain, but indicates pain by ongoing growling and agitation.
  • How can we resolve this issue? First line of response to growling is to provide his phone and magazine.  If Tim continues to growl provide pain relief as directed by medical staff.

4. What’s the issue? Tim can become distressed and finds it hard to self soothe.

  • Why does this occur? Unfamiliar environments can frighten Tim.
  • How can we resolve this issue? Sing ‘Advance Australia Fair’ close to his ear and after a few repeats he will settle.

Tim’s TOP 5 could look like this:

Tim's TOP 5

TOP5 – Central Coast Local Health District includes resources for people living at home, in supported accommodation and/or in residential care.

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