'DEMENTIA & ME' - A GUIDED QUESTIONNAIRE

We are working to improve our health and social care services across Powys. To do this, we are trying to make sure any changes we make are informed by what the people using those services tell us.
We already know the people who live with dementia in Wales have said they want to have access to a named and consistent contact (‘a navigator’) who can offer support, advice, information, and assistance from the point of their diagnosis to the end of their life.
Local people have already had a chance to say what they want from this ‘navigator’. Now, we are checking with as many people as possible who live, work or care for someone in Powys to confirm we are getting this right.
To help you to have your say, we have attached an illustration of what people have said so far. You may or may not agree with the point made and you may also want to add your own thoughts.
Thank you in advance for your time.
1.The key qualities people said they would value in a person they ‘connect’ with– Please rate the importance of each statement from 1 to 5, with 1 being the lowest and 5 being the highest.
1 Low score
2
3
4
5 High score
Compassionate and empathetic
Passionate and enthusiastic
Non-judgemental and approachable
Well-mannered
Flexible
Trustworthy
Friendly
2.People said the ‘navigator’ needs to know– Please rate the importance of each statement from 1 to 4, with 1 being the lowest and 4 being the highest.
1 Low score
2
3
4 High score
Understanding of dementia
Knowledge of the services and support available in the area and how you can find them
What your rights and entitlements are
Understand your medical history
3.The skills people said this ‘navigator’ needs to have– Please rate the importance of each statement from 1 to 3, with 1 being the lowest and 3 being the highest.
1 Low score
2
3 High score
Ability to make connections with a wide range of different people, including individuals, carers, and professionals
Good communication skills and be a good listener
Ability to challenge the system and empower people
4.People said they want the ‘navigator’ to – Please rate the importance of each statement from 1 to 5, with 1 being the lowest and 5 being the highest.
1 Low Score
2
3
4
5 High score
Speak up on their behalf
Have relationships with the local authority, health services and third sector organisations (including the Alzheimer’s society, GPs, pharmacies, and social services)
Know what is available so they can signpost them to where they need to go (e.g. have a map of services that are there to help)
Be there in-person to provide support when they need it (e.g. in memory clinic)
Be there from point of diagnosis
Provide information and advice
Regularly review their situation
Raise awareness of what to expect and what help is available
Focus on what matters to the person and work with the person to make sure anything done for them involves them
Escalate any concerns to the right people
Help people to access talking therapies to help them come to terms with what has happened
Support access to dementia-relevant training
5.People said how the ‘navigator’ should do their job – Please rate the importance of each statement from 1 to 5, with 1 being the lowest and 5 being the highest.
1 Low score
2
3
4
5 High score
Get to know the individual and ‘what matters to them’
Work as part of a consistent and seamless service
Build trust by being reliable
Consider carers separately as their situation and feelings are often different
Easy to contact
Act as a single point of contact
Involved throughout the persons journey
Keep in touch with people who are isolated
Respect and respond to people’s cultural needs and differences
Understand it is a journey and the support needed changes along the way
Recognise the impact of diagnosis – e.g. on the whole family
6.Who do you think should manage the navigator role? (Local Authority, Powys Teaching Health Board or a third/voluntary sector organisation)
7.Finally, where do you think the 'navigator’ should be based and why do you think it’s important they are based there? (e.g. Memory clinic, GP surgery, community building etc.)