'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.

Question Title

* 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	Compassionate and empathetic 1 Low score	Compassionate and empathetic 2	Compassionate and empathetic 3	Compassionate and empathetic 4	Compassionate and empathetic 5 High score
Passionate and enthusiastic	Passionate and enthusiastic 1 Low score	Passionate and enthusiastic 2	Passionate and enthusiastic 3	Passionate and enthusiastic 4	Passionate and enthusiastic 5 High score
Non-judgemental and approachable	Non-judgemental and approachable 1 Low score	Non-judgemental and approachable 2	Non-judgemental and approachable 3	Non-judgemental and approachable 4	Non-judgemental and approachable 5 High score
Well-mannered	Well-mannered 1 Low score	Well-mannered 2	Well-mannered 3	Well-mannered 4	Well-mannered 5 High score
Flexible	Flexible 1 Low score	Flexible 2	Flexible 3	Flexible 4	Flexible 5 High score
Trustworthy	Trustworthy 1 Low score	Trustworthy 2	Trustworthy 3	Trustworthy 4	Trustworthy 5 High score
Friendly	Friendly 1 Low score	Friendly 2	Friendly 3	Friendly 4	Friendly 5 High score

What would you like added to this list?

Question Title

* 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	Understanding of dementia 1 Low score	Understanding of dementia 2	Understanding of dementia 3	Understanding of dementia 4 High score
Knowledge of the services and support available in the area and how you can find them	Knowledge of the services and support available in the area and how you can find them 1 Low score	Knowledge of the services and support available in the area and how you can find them 2	Knowledge of the services and support available in the area and how you can find them 3	Knowledge of the services and support available in the area and how you can find them 4 High score
What your rights and entitlements are	What your rights and entitlements are 1 Low score	What your rights and entitlements are 2	What your rights and entitlements are 3	What your rights and entitlements are 4 High score
Understand your medical history	Understand your medical history 1 Low score	Understand your medical history 2	Understand your medical history 3	Understand your medical history 4 High score

What would you like added to this list?

Question Title

* 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	Ability to make connections with a wide range of different people, including individuals, carers, and professionals 1 Low score	Ability to make connections with a wide range of different people, including individuals, carers, and professionals 2	Ability to make connections with a wide range of different people, including individuals, carers, and professionals 3 High score
Good communication skills and be a good listener	Good communication skills and be a good listener 1 Low score	Good communication skills and be a good listener 2	Good communication skills and be a good listener 3 High score
Ability to challenge the system and empower people	Ability to challenge the system and empower people 1 Low score	Ability to challenge the system and empower people 2	Ability to challenge the system and empower people 3 High score

What would you like added to this list?

Question Title

* 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	Speak up on their behalf 1 Low Score	Speak up on their behalf 2	Speak up on their behalf 3	Speak up on their behalf 4	Speak up on their behalf 5 High score
Have relationships with the local authority, health services and third sector organisations (including the Alzheimer’s society, GPs, pharmacies, and social services)	Have relationships with the local authority, health services and third sector organisations (including the Alzheimer’s society, GPs, pharmacies, and social services) 1 Low Score	Have relationships with the local authority, health services and third sector organisations (including the Alzheimer’s society, GPs, pharmacies, and social services) 2	Have relationships with the local authority, health services and third sector organisations (including the Alzheimer’s society, GPs, pharmacies, and social services) 3	Have relationships with the local authority, health services and third sector organisations (including the Alzheimer’s society, GPs, pharmacies, and social services) 4	Have relationships with the local authority, health services and third sector organisations (including the Alzheimer’s society, GPs, pharmacies, and social services) 5 High score
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)	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) 1 Low Score	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) 2	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) 3	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) 4	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) 5 High score
Be there in-person to provide support when they need it (e.g. in memory clinic)	Be there in-person to provide support when they need it (e.g. in memory clinic) 1 Low Score	Be there in-person to provide support when they need it (e.g. in memory clinic) 2	Be there in-person to provide support when they need it (e.g. in memory clinic) 3	Be there in-person to provide support when they need it (e.g. in memory clinic) 4	Be there in-person to provide support when they need it (e.g. in memory clinic) 5 High score
Be there from point of diagnosis	Be there from point of diagnosis 1 Low Score	Be there from point of diagnosis 2	Be there from point of diagnosis 3	Be there from point of diagnosis 4	Be there from point of diagnosis 5 High score
Provide information and advice	Provide information and advice 1 Low Score	Provide information and advice 2	Provide information and advice 3	Provide information and advice 4	Provide information and advice 5 High score
Regularly review their situation	Regularly review their situation 1 Low Score	Regularly review their situation 2	Regularly review their situation 3	Regularly review their situation 4	Regularly review their situation 5 High score
Raise awareness of what to expect and what help is available	Raise awareness of what to expect and what help is available 1 Low Score	Raise awareness of what to expect and what help is available 2	Raise awareness of what to expect and what help is available 3	Raise awareness of what to expect and what help is available 4	Raise awareness of what to expect and what help is available 5 High score
Focus on what matters to the person and work with the person to make sure anything done for them involves them	Focus on what matters to the person and work with the person to make sure anything done for them involves them 1 Low Score	Focus on what matters to the person and work with the person to make sure anything done for them involves them 2	Focus on what matters to the person and work with the person to make sure anything done for them involves them 3	Focus on what matters to the person and work with the person to make sure anything done for them involves them 4	Focus on what matters to the person and work with the person to make sure anything done for them involves them 5 High score
Escalate any concerns to the right people	Escalate any concerns to the right people 1 Low Score	Escalate any concerns to the right people 2	Escalate any concerns to the right people 3	Escalate any concerns to the right people 4	Escalate any concerns to the right people 5 High score
Help people to access talking therapies to help them come to terms with what has happened	Help people to access talking therapies to help them come to terms with what has happened 1 Low Score	Help people to access talking therapies to help them come to terms with what has happened 2	Help people to access talking therapies to help them come to terms with what has happened 3	Help people to access talking therapies to help them come to terms with what has happened 4	Help people to access talking therapies to help them come to terms with what has happened 5 High score
Support access to dementia-relevant training	Support access to dementia-relevant training 1 Low Score	Support access to dementia-relevant training 2	Support access to dementia-relevant training 3	Support access to dementia-relevant training 4	Support access to dementia-relevant training 5 High score

What would you like added to this list?

Question Title

* 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’	Get to know the individual and ‘what matters to them’ 1 Low score	Get to know the individual and ‘what matters to them’ 2	Get to know the individual and ‘what matters to them’ 3	Get to know the individual and ‘what matters to them’ 4	Get to know the individual and ‘what matters to them’ 5 High score
Work as part of a consistent and seamless service	Work as part of a consistent and seamless service 1 Low score	Work as part of a consistent and seamless service 2	Work as part of a consistent and seamless service 3	Work as part of a consistent and seamless service 4	Work as part of a consistent and seamless service 5 High score
Build trust by being reliable	Build trust by being reliable 1 Low score	Build trust by being reliable 2	Build trust by being reliable 3	Build trust by being reliable 4	Build trust by being reliable 5 High score
Consider carers separately as their situation and feelings are often different	Consider carers separately as their situation and feelings are often different 1 Low score	Consider carers separately as their situation and feelings are often different 2	Consider carers separately as their situation and feelings are often different 3	Consider carers separately as their situation and feelings are often different 4	Consider carers separately as their situation and feelings are often different 5 High score
Easy to contact	Easy to contact 1 Low score	Easy to contact 2	Easy to contact 3	Easy to contact 4	Easy to contact 5 High score
Act as a single point of contact	Act as a single point of contact 1 Low score	Act as a single point of contact 2	Act as a single point of contact 3	Act as a single point of contact 4	Act as a single point of contact 5 High score
Involved throughout the persons journey	Involved throughout the persons journey 1 Low score	Involved throughout the persons journey 2	Involved throughout the persons journey 3	Involved throughout the persons journey 4	Involved throughout the persons journey 5 High score
Keep in touch with people who are isolated	Keep in touch with people who are isolated 1 Low score	Keep in touch with people who are isolated 2	Keep in touch with people who are isolated 3	Keep in touch with people who are isolated 4	Keep in touch with people who are isolated 5 High score
Respect and respond to people’s cultural needs and differences	Respect and respond to people’s cultural needs and differences 1 Low score	Respect and respond to people’s cultural needs and differences 2	Respect and respond to people’s cultural needs and differences 3	Respect and respond to people’s cultural needs and differences 4	Respect and respond to people’s cultural needs and differences 5 High score
Understand it is a journey and the support needed changes along the way	Understand it is a journey and the support needed changes along the way 1 Low score	Understand it is a journey and the support needed changes along the way 2	Understand it is a journey and the support needed changes along the way 3	Understand it is a journey and the support needed changes along the way 4	Understand it is a journey and the support needed changes along the way 5 High score
Recognise the impact of diagnosis – e.g. on the whole family	Recognise the impact of diagnosis – e.g. on the whole family 1 Low score	Recognise the impact of diagnosis – e.g. on the whole family 2	Recognise the impact of diagnosis – e.g. on the whole family 3	Recognise the impact of diagnosis – e.g. on the whole family 4	Recognise the impact of diagnosis – e.g. on the whole family 5 High score

What would you like added to this list?

Question Title

* 6. Who do you think should manage the navigator role? (Local Authority, Powys Teaching Health Board or a third/voluntary sector organisation)

Question Title

* 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.)