This site uses cookies to store information on your computer. I'm fine with this Cookie information

Facing Dementia Together

Project Title :- Facing Dementia Together

 

Start date / end date (if pilot study)

 

02/02/09  31/03/2011

 

Organisation  - (Health / Social Work / Voluntary Organisation / Private Sector)

 

Alzheimer Scotland

 

Setting up the project :-

 

Why the project was set up?

 

One of the barriers for people with dementia is the widespread lack of post-diagnostic support, which denies them the opportunity to develop their understanding of the illness, enhance their coping skills and improve their chances of being cared for in their own homes for longer. The project was set up to help people with dementia to become active participants in their own care and to be supported to maintain or recover control in their lives as much as possible at each stage of the illness.  By providing support following diagnosis while the person with dementia has the capacity to make decisions and plan ahead, the project aims to help people stay connected in their communities, living as full a life as possible and to be able to plan ahead for their future needs.  The project will help to bring the personalisation agenda into the field of dementia and aims to raise awareness of the benefits of individualised budgets direct payments for people with dementia, enabling people with dementia to design and tailor support that meets their needs.

 

 

What are the aims and objectives?

 

The pilot will aim to support, enable and empower people with early dementia, together with their carers/supporters, to be able to take control of the services they need, now and in the future, and to work with a local authority and health board to develop the systems and approaches to make this a realistic option.

 

Project objectives

·               To work with the local authorities, CHP/CHCPs and health board to develop clear and straightforward referral and resource allocation systems. 

·               To help the person with dementia and their carer(s) to regain, attain and/or maintain a good quality of life following on from the point of diagnosis

·               To enable the person with dementia and their carer(s) to remain actively involved in their community. 

·               To maximise the extent to which the person with dementia will begin, from the point of diagnosis, be supported in taking control of their own lives and future plans for their care

·               To help to minimise any negative effects on the person or carer as a result of receiving a diagnosis of dementia such as reducing the incidence and/or severity of depression and anxiety.

·               To ensure that the person with dementia is fully involved in the decision making about any support and services that they require. 

·               To ensure good communication and co-ordination of support services between agencies/organisations

 

Who was involved in setting it up?

 

The Scottish Government have funded Alzheimer Scotland and the Dementia Services Development Centre at the University of Stirling to run pilot projects looking at practical solutions for deliverable and effective post-diagnosis support services for people with dementia in three NHS Board areas. The aim of the three pilots is to support improvement in approaches to post-diagnostic support throughout Scotland.   

 

What were the main challenges?

 

The main challenge was finding the partners to work with us on this pilot.  However, this did not prove to be too onerous once discussions were started. East Renfrewshire CHP and Renfrewshire CHP and Council are now working alongside us in the pilot.  The challenge now is to find a resource allocation model that will work for those individuals participating in the pilot.

 

 

Description of project :- (No more than 500 words)

 

The pilot supports, enables and empowers people with early dementia, together with their carers/supporters, to be able to take control of the services they need, now and in the future, and to work with their local authority and NHS to develop the systems and approaches to make this a realistic option.

 

The Facing Dementia Together project will provide information, advice, signposting and emotional and practical support to help the person and their carers/supporters to help them to understand and come to terms with living with dementia.  The project will assist people with dementia and their families/supporters to put in place financial and legal arrangements to maximise their control over future decisions made on their behalf (e.g. powers of attorney, advance statements).  The project will support people to maintain the important relationships in their lives and remain involved in their communities, continuing to enjoy social and recreational activities. 

 

Using person centred planning tools, staff will assist people with dementia to realise their aspirations and fears, and to plan ahead for their future needs, discuss options for future care and set out their wishes for the future.  The project aims to help people to think creatively about the support they might require and to make use of ‘natural supports’ including support from family, friends and community. 

 

Evaluation :-  The project will be independently evaluated by the  Dementia Services Development Centre at the University of Stirling.   Professor Alison Bowes will lead the team. Dr Fiona Kelly, a qualified nurse, will lead the fieldwork with people with dementia and carers. Dr Sherry Macintosh will assist with the interviews with people with dementia and carers, and will conduct the key informant interviews.   Mr Michael Wilson will analyse the quantitative data. 

 

The evaluation will adopt a comparative design, with the intervention group including people newly diagnosed with dementia and their carers who receive the post diagnostic support provided through the ‘Facing Dementia Together’ pilot, and the comparator group consisting of people newly diagnosed with dementia and their carers who receive the usual support in the same area. All participants will have capacity to give informed consent.

 

In addition, the evaluation will include a small number of local professionals and frontline workers (called ‘key informants’) who will come into contact both with the intervention group and the comparator group, and who will e in a position to reflect on their perspectives on the impact of the intervention.

 

Has an evaluation taken place?

 

The research team are currently preparing the research instruments and applying for NHS ethical approval.  It is anticipated that they will begin the recruitment of and interviews with patients, carers and key informants by November.  The data will be analysed and the findings written between November 2010 and January 2011.  An evaluation report will be produced for the Scottish Government and paper(s) submitted for publication in journal(s).  Participants will be given written feedback of the evaluation. 

 

How do you know it has made a difference?

 

The aim of the evaluation is to identify what difference, if any, the post diagnostic support service makes for people with dementia and their carers in terms of their lives with dementia over a period of one year from diagnosis. The questions are:

 

  1. What difference, if any, does the post diagnostic support service make to quality of life for people with dementia and their carers?
  2. What difference, if any, does the post diagnostic support service make to service access and service use for people with dementia and their carers?
  3. What difference, if any, does the post diagnostic support service make to independence and choice for people with dementia and their carers?
  4. How successfully has the intervention realised its specific intended outcomes for people with dementia and their carers?
  5. What difference, if any, does the post diagnostic support service make for professionals and frontline carers who work with people with dementia and their carers?
  6. How successfully has the intervention realised its specific intended outcomes for local authority and health staff?

 

If it has not been evaluated do you aim to evaluate it or would you like assistance?

 

What changes would you make if you were starting the project again?

  N/A

Future plans for project :-  N/A

 

What are the future plans for the project?

 

Additional Information :-

 

Please provide any additional information about the project that may benefit others

 

Please provide any associated leaflets/documents/ team pictures/useful websites :-

 

 

Contact Person  Tracy Gilmour

Job Title  Post-Diagnostic Practice Manager

Base Alzheimer Scotland @ Undercover, 56 Kelburn Street, Barrhead, G78 1LR

E-mail  [email protected]

Tel No.  0141 876 9523

 

 

 

Project Title :- Facing Dementia Together

 

Start date / end date (if pilot study)

 

02/02/09  31/03/2011

 

Organisation  - (Health / Social Work / Voluntary Organisation / Private Sector)

 

Alzheimer Scotland

 

Setting up the project :-

 

Why the project was set up?

 

One of the barriers for people with dementia is the widespread lack of post-diagnostic support, which denies them the opportunity to develop their understanding of the illness, enhance their coping skills and improve their chances of being cared for in their own homes for longer. The project was set up to help people with dementia to become active participants in their own care and to be supported to maintain or recover control in their lives as much as possible at each stage of the illness.  By providing support following diagnosis while the person with dementia has the capacity to make decisions and plan ahead, the project aims to help people stay connected in their communities, living as full a life as possible and to be able to plan ahead for their future needs.  The project will help to bring the personalisation agenda into the field of dementia and aims to raise awareness of the benefits of individualised budgets direct payments for people with dementia, enabling people with dementia to design and tailor support that meets their needs.

 

 

What are the aims and objectives?

 

The pilot will aim to support, enable and empower people with early dementia, together with their carers/supporters, to be able to take control of the services they need, now and in the future, and to work with a local authority and health board to develop the systems and approaches to make this a realistic option.

 

Project objectives

·               To work with the local authorities, CHP/CHCPs and health board to develop clear and straightforward referral and resource allocation systems. 

·               To help the person with dementia and their carer(s) to regain, attain and/or maintain a good quality of life following on from the point of diagnosis

·               To enable the person with dementia and their carer(s) to remain actively involved in their community. 

·               To maximise the extent to which the person with dementia will begin, from the point of diagnosis, be supported in taking control of their own lives and future plans for their care

·               To help to minimise any negative effects on the person or carer as a result of receiving a diagnosis of dementia such as reducing the incidence and/or severity of depression and anxiety.

·               To ensure that the person with dementia is fully involved in the decision making about any support and services that they require. 

·               To ensure good communication and co-ordination of support services between agencies/organisations

 

Who was involved in setting it up?

 

The Scottish Government have funded Alzheimer Scotland and the Dementia Services Development Centre at the University of Stirling to run pilot projects looking at practical solutions for deliverable and effective post-diagnosis support services for people with dementia in three NHS Board areas. The aim of the three pilots is to support improvement in approaches to post-diagnostic support throughout Scotland.   

 

What were the main challenges?

 

The main challenge was finding the partners to work with us on this pilot.  However, this did not prove to be too onerous once discussions were started. East Renfrewshire CHP and Renfrewshire CHP and Council are now working alongside us in the pilot.  The challenge now is to find a resource allocation model that will work for those individuals participating in the pilot.

 

 

Description of project :- (No more than 500 words)

 

The pilot supports, enables and empowers people with early dementia, together with their carers/supporters, to be able to take control of the services they need, now and in the future, and to work with their local authority and NHS to develop the systems and approaches to make this a realistic option.

 

The Facing Dementia Together project will provide information, advice, signposting and emotional and practical support to help the person and their carers/supporters to help them to understand and come to terms with living with dementia.  The project will assist people with dementia and their families/supporters to put in place financial and legal arrangements to maximise their control over future decisions made on their behalf (e.g. powers of attorney, advance statements).  The project will support people to maintain the important relationships in their lives and remain involved in their communities, continuing to enjoy social and recreational activities. 

 

Using person centred planning tools, staff will assist people with dementia to realise their aspirations and fears, and to plan ahead for their future needs, discuss options for future care and set out their wishes for the future.  The project aims to help people to think creatively about the support they might require and to make use of ‘natural supports’ including support from family, friends and community. 

 

Evaluation :-  The project will be independently evaluated by the  Dementia Services Development Centre at the University of Stirling.   Professor Alison Bowes will lead the team. Dr Fiona Kelly, a qualified nurse, will lead the fieldwork with people with dementia and carers. Dr Sherry Macintosh will assist with the interviews with people with dementia and carers, and will conduct the key informant interviews.   Mr Michael Wilson will analyse the quantitative data. 

 

The evaluation will adopt a comparative design, with the intervention group including people newly diagnosed with dementia and their carers who receive the post diagnostic support provided through the ‘Facing Dementia Together’ pilot, and the comparator group consisting of people newly diagnosed with dementia and their carers who receive the usual support in the same area. All participants will have capacity to give informed consent.

 

In addition, the evaluation will include a small number of local professionals and frontline workers (called ‘key informants’) who will come into contact both with the intervention group and the comparator group, and who will e in a position to reflect on their perspectives on the impact of the intervention.

 

Has an evaluation taken place?

 

The research team are currently preparing the research instruments and applying for NHS ethical approval.  It is anticipated that they will begin the recruitment of and interviews with patients, carers and key informants by November.  The data will be analysed and the findings written between November 2010 and January 2011.  An evaluation report will be produced for the Scottish Government and paper(s) submitted for publication in journal(s).  Participants will be given written feedback of the evaluation. 

 

How do you know it has made a difference?

 

The aim of the evaluation is to identify what difference, if any, the post diagnostic support service makes for people with dementia and their carers in terms of their lives with dementia over a period of one year from diagnosis. The questions are:

 

  1. What difference, if any, does the post diagnostic support service make to quality of life for people with dementia and their carers?
  2. What difference, if any, does the post diagnostic support service make to service access and service use for people with dementia and their carers?
  3. What difference, if any, does the post diagnostic support service make to independence and choice for people with dementia and their carers?
  4. How successfully has the intervention realised its specific intended outcomes for people with dementia and their carers?
  5. What difference, if any, does the post diagnostic support service make for professionals and frontline carers who work with people with dementia and their carers?
  6. How successfully has the intervention realised its specific intended outcomes for local authority and health staff?

 

If it has not been evaluated do you aim to evaluate it or would you like assistance?

 

What changes would you make if you were starting the project again?

  N/A

Future plans for project :-  N/A

 

What are the future plans for the project?

 

Additional Information :-

 

Please provide any additional information about the project that may benefit others

 

Please provide any associated leaflets/documents/ team pictures/useful websites :-

 

 

Contact Person  Tracy Gilmour

Job Title  Post-Diagnostic Practice Manager

Base Alzheimer Scotland @ Undercover, 56 Kelburn Street, Barrhead, G78 1LR

E-mail  [email protected]

Tel No.  0141 876 9523

 

 

 

Project Title :- Facing Dementia Together

 

Start date / end date (if pilot study)

 

02/02/09  31/03/2011

 

Organisation  - (Health / Social Work / Voluntary Organisation / Private Sector)

 

Alzheimer Scotland

 

Setting up the project :-

 

Why the project was set up?

 

One of the barriers for people with dementia is the widespread lack of post-diagnostic support, which denies them the opportunity to develop their understanding of the illness, enhance their coping skills and improve their chances of being cared for in their own homes for longer. The project was set up to help people with dementia to become active participants in their own care and to be supported to maintain or recover control in their lives as much as possible at each stage of the illness.  By providing support following diagnosis while the person with dementia has the capacity to make decisions and plan ahead, the project aims to help people stay connected in their communities, living as full a life as possible and to be able to plan ahead for their future needs.  The project will help to bring the personalisation agenda into the field of dementia and aims to raise awareness of the benefits of individualised budgets direct payments for people with dementia, enabling people with dementia to design and tailor support that meets their needs.

 

 

What are the aims and objectives?

 

The pilot will aim to support, enable and empower people with early dementia, together with their carers/supporters, to be able to take control of the services they need, now and in the future, and to work with a local authority and health board to develop the systems and approaches to make this a realistic option.

 

Project objectives

·               To work with the local authorities, CHP/CHCPs and health board to develop clear and straightforward referral and resource allocation systems. 

·               To help the person with dementia and their carer(s) to regain, attain and/or maintain a good quality of life following on from the point of diagnosis

·               To enable the person with dementia and their carer(s) to remain actively involved in their community. 

·               To maximise the extent to which the person with dementia will begin, from the point of diagnosis, be supported in taking control of their own lives and future plans for their care

·               To help to minimise any negative effects on the person or carer as a result of receiving a diagnosis of dementia such as reducing the incidence and/or severity of depression and anxiety.

·               To ensure that the person with dementia is fully involved in the decision making about any support and services that they require. 

·               To ensure good communication and co-ordination of support services between agencies/organisations

 

Who was involved in setting it up?

 

The Scottish Government have funded Alzheimer Scotland and the Dementia Services Development Centre at the University of Stirling to run pilot projects looking at practical solutions for deliverable and effective post-diagnosis support services for people with dementia in three NHS Board areas. The aim of the three pilots is to support improvement in approaches to post-diagnostic support throughout Scotland.   

 

What were the main challenges?

 

The main challenge was finding the partners to work with us on this pilot.  However, this did not prove to be too onerous once discussions were started. East Renfrewshire CHP and Renfrewshire CHP and Council are now working alongside us in the pilot.  The challenge now is to find a resource allocation model that will work for those individuals participating in the pilot.

 

 

Description of project :- (No more than 500 words)

 

The pilot supports, enables and empowers people with early dementia, together with their carers/supporters, to be able to take control of the services they need, now and in the future, and to work with their local authority and NHS to develop the systems and approaches to make this a realistic option.

 

The Facing Dementia Together project will provide information, advice, signposting and emotional and practical support to help the person and their carers/supporters to help them to understand and come to terms with living with dementia.  The project will assist people with dementia and their families/supporters to put in place financial and legal arrangements to maximise their control over future decisions made on their behalf (e.g. powers of attorney, advance statements).  The project will support people to maintain the important relationships in their lives and remain involved in their communities, continuing to enjoy social and recreational activities. 

 

Using person centred planning tools, staff will assist people with dementia to realise their aspirations and fears, and to plan ahead for their future needs, discuss options for future care and set out their wishes for the future.  The project aims to help people to think creatively about the support they might require and to make use of ‘natural supports’ including support from family, friends and community. 

 

Evaluation :-  The project will be independently evaluated by the  Dementia Services Development Centre at the University of Stirling.   Professor Alison Bowes will lead the team. Dr Fiona Kelly, a qualified nurse, will lead the fieldwork with people with dementia and carers. Dr Sherry Macintosh will assist with the interviews with people with dementia and carers, and will conduct the key informant interviews.   Mr Michael Wilson will analyse the quantitative data. 

 

The evaluation will adopt a comparative design, with the intervention group including people newly diagnosed with dementia and their carers who receive the post diagnostic support provided through the ‘Facing Dementia Together’ pilot, and the comparator group consisting of people newly diagnosed with dementia and their carers who receive the usual support in the same area. All participants will have capacity to give informed consent.

 

In addition, the evaluation will include a small number of local professionals and frontline workers (called ‘key informants’) who will come into contact both with the intervention group and the comparator group, and who will e in a position to reflect on their perspectives on the impact of the intervention.

 

Has an evaluation taken place?

 

The research team are currently preparing the research instruments and applying for NHS ethical approval.  It is anticipated that they will begin the recruitment of and interviews with patients, carers and key informants by November.  The data will be analysed and the findings written between November 2010 and January 2011.  An evaluation report will be produced for the Scottish Government and paper(s) submitted for publication in journal(s).  Participants will be given written feedback of the evaluation. 

 

How do you know it has made a difference?

 

The aim of the evaluation is to identify what difference, if any, the post diagnostic support service makes for people with dementia and their carers in terms of their lives with dementia over a period of one year from diagnosis. The questions are:

 

  1. What difference, if any, does the post diagnostic support service make to quality of life for people with dementia and their carers?
  2. What difference, if any, does the post diagnostic support service make to service access and service use for people with dementia and their carers?
  3. What difference, if any, does the post diagnostic support service make to independence and choice for people with dementia and their carers?
  4. How successfully has the intervention realised its specific intended outcomes for people with dementia and their carers?
  5. What difference, if any, does the post diagnostic support service make for professionals and frontline carers who work with people with dementia and their carers?
  6. How successfully has the intervention realised its specific intended outcomes for local authority and health staff?

 

If it has not been evaluated do you aim to evaluate it or would you like assistance?

 

What changes would you make if you were starting the project again?

  N/A

Future plans for project :-  N/A

 

What are the future plans for the project?

 

Additional Information :-

 

Please provide any additional information about the project that may benefit others

 

Please provide any associated leaflets/documents/ team pictures/useful websites :-

 

 

Contact Person  Tracy Gilmour

Job Title  Post-Diagnostic Practice Manager

Base Alzheimer Scotland @ Undercover, 56 Kelburn Street, Barrhead, G78 1LR

E-mail  [email protected]

Tel No.  0141 876 9523