“Consultation with people who are invested in the outcome of your work, works” : World Alzheimer’s Day

Posted on: 21 September 2022

Today is World Alzheimer’s Day, a global opportunity to raise awareness around, educate, encourage support and demystify dementia. It’s also an opportunity for Trinity to highlight the upcoming launch of an exciting new research network – Dementia Trials Ireland (DTI) on Tuesday 27^th September 2022. DTI is a HRB research network to enhance dementia care and outcomes.

Karen Meenan, PPI and Communications/Dissemination Coordinator in DTI, discusses the importance of a Public, Patient and Carer Involvement (PPI) panel to the work of Dementia Trials Ireland. PPI in research means that the public and patients are involved in planning and doing research from start to finish and help tell the public about the results of research.

Karen also shares reflections from some of the DTI members. This article is an extract from a longer blog-post written by Karen for the HRB website for World Alzheimer’s Day here: https://www.hrb.ie/news/blog/article/ppi-in-action/

"DTI was formed in 2022 to enable every person in Ireland living with dementia, or at risk of developing dementia, the opportunity to access clinical trials. Its cornerstone is a PPI panel and the vision to embrace the feedback and opinion of all members. This process can be slow, but it is worth it. Simply put, consultation with people who are invested in the outcome of your work, works.

We formed a panel of 13 people from all over Ireland for their combined lived experience with different types and stages of dementia, across several age groups. Importantly, this means the conversation is not just about Alzheimer's disease, and not just about older people. The panel has already contributed valuably to the work of DTI by: contributing to the design process for the new network logo, advising on the website and video content, representing DTI at online conferences and workshops and providing researchers and clinicians with feedback on lay summaries of scientific papers.

In short, everything in DTI is done in collaboration with our PPI panel to ensure our work is a true co-creation. This is something I am extremely passionate about and proud of."

'What PPI means to me' – reflections from DTI panellists

Kevin Quaid, aged 59, a person living with Lewy body dementia (LBD)

“Membership of the DTI PPI panel means everything to me. It ensures my voice is important and listened to. As I have become more involved in PPI, I see that increasing numbers of people, from carers to clinicians, are beginning to understand that they need to listen to the patient's voice. In having the disease, we are also experts. But the most important thing to me about being on this panel is knowing I am useful, knowing I am not a burden, knowing I am worth listening to, and knowing what I say is valued.”

Kate Murphy, aged 61, former caregiver to her late mum Margaret, who had Alzheimer’s disease

“I feel excited and privileged to be a member of the DTI PPI panel. My mum, Margaret, was diagnosed in 2009, and I cared for her for several years until she died in 2017. As the disease progressed, she reverted to speaking in Irish, the language she was educated in. Being involved with decisions that can enhance the lives of those living with dementia gives me and other PPI members a voice and hope for the future. The HRB’s funding of DTI is precious and will help to give dementia the recognition it deserves within society.”

Kate Byrne, aged 64, caregiver to her husband John who has Alzheimer’s disease, aged 80

“I am honoured to be on a panel with those seeking change and hope in what must be one of mankind’s greatest fears – a diagnosis of dementia. I have always been a very private person. I joined this panel and went public because I believe society needs to understand and respect dementia more. Understanding is about education and respect is about continuing to recognize the person at the core of a dementia diagnosis. In my case, this person is my beloved husband, John. We have encountered friends out walking who have looked the other way because they don’t know what to say. I’d like my membership of this panel to help change that.”

 

You can read the full blog post on the HRB website at this link: https://www.hrb.ie/news/blog/article/ppi-in-action/

 

 

 

 

Today is World Alzheimer’s Day, a global opportunity to raise awareness around, educate, encourage support and demystify dementia. It’s also an opportunity for Trinity to highlight the upcoming launch of an exciting new research network – Dementia Trials Ireland (DTI) on Tuesday 27^th September 2022. DTI is a HRB research network to enhance dementia care and outcomes.

 

Karen Meenan, PPI and Communications/Dissemination Coordinator in DTI, discusses the importance of a Public, Patient and Carer Involvement (PPI) panel to the work of Dementia Trials Ireland. PPI in research means that the public and patients are involved in planning and doing research from start to finish and help tell the public about the results of research.

 

Karen also shares reflections from some of the DTI members. This article is an extract from a longer blog-post written by Karen for the HRB website for World Alzheimer’s Day here: https://www.hrb.ie/news/blog/article/ppi-in-action/

 

DTI was formed in 2022 to enable every person in Ireland living with dementia, or at risk of developing dementia, the opportunity to access clinical trials. Its cornerstone is a PPI panel and the vision to embrace the feedback and opinion of all members. This process can be slow, but it is worth it. Simply put, consultation with people who are invested in the outcome of your work, works.

We formed a panel of 13 people from all over Ireland for their combined lived experience with different types and stages of dementia, across several age groups. Importantly, this means the conversation is not just about Alzheimer's disease, and not just about older people. The panel has already contributed valuably to the work of DTI by: contributing to the design process for the new network logo, advising on the website and video content, representing DTI at online conferences and workshops and providing researchers and clinicians with feedback on lay summaries of scientific papers.

In short, everything in DTI is done in collaboration with our PPI panel to ensure our work is a true co-creation. This is something I am extremely passionate about and proud of.

 What PPI means to me – reflections from DTI panellists

Kevin Quaid, aged 59, a person living with Lewy body dementia (LBD)

“Membership of the DTI PPI panel means everything to me. It ensures my voice is important and listened to. As I have become more involved in PPI, I see that increasing numbers of people, from carers to clinicians, are beginning to understand that they need to listen to the patient's voice. In having the disease, we are also experts. But the most important thing to me about being on this panel is knowing I am useful, knowing I am not a burden, knowing I am worth listening to, and knowing what I say is valued.”

Kate Murphy, aged 61, former caregiver to her late mum Margaret, who had Alzheimer’s disease

“I feel excited and privileged to be a member of the DTI PPI panel. My mum, Margaret, was diagnosed in 2009, and I cared for her for several years until she died in 2017. As the disease progressed, she reverted to speaking in Irish, the language she was educated in. Being involved with decisions that can enhance the lives of those living with dementia gives me and other PPI members a voice and hope for the future. The HRB’s funding of DTI is precious and will help to give dementia the recognition it deserves within society.”

Kate Byrne, aged 64, caregiver to her husband John who has Alzheimer’s disease, aged 80

“I am honoured to be on a panel with those seeking change and hope in what must be one of mankind’s greatest fears – a diagnosis of dementia. I have always been a very private person. I joined this panel and went public because I believe society needs to understand and respect dementia more. Understanding is about education and respect is about continuing to recognize the person at the core of a dementia diagnosis. In my case, this person is my beloved husband, John. We have encountered friends out walking who have looked the other way because they don’t know what to say. I’d like my membership of this panel to help change that.”

 

You can read the full blog post on the HRB website at this link: https://www.hrb.ie/news/blog/article/ppi-in-action/

 

 

 

Today is World Alzheimer’s Day, a global opportunity to raise awareness around, educate, encourage support and demystify dementia. It’s also an opportunity for Trinity to highlight the upcoming launch of an exciting new research network – Dementia Trials Ireland (DTI) on Tuesday 27^th September 2022. DTI is a HRB research network to enhance dementia care and outcomes.

 

Karen Meenan, PPI and Communications/Dissemination Coordinator in DTI, discusses the importance of a Public, Patient and Carer Involvement (PPI) panel to the work of Dementia Trials Ireland. PPI in research means that the public and patients are involved in planning and doing research from start to finish and help tell the public about the results of research.

 

Karen also shares reflections from some of the DTI members. This article is an extract from a longer blog-post written by Karen for the HRB website for World Alzheimer’s Day here: https://www.hrb.ie/news/blog/article/ppi-in-action/

 

DTI was formed in 2022 to enable every person in Ireland living with dementia, or at risk of developing dementia, the opportunity to access clinical trials. Its cornerstone is a PPI panel and the vision to embrace the feedback and opinion of all members. This process can be slow, but it is worth it. Simply put, consultation with people who are invested in the outcome of your work, works.

We formed a panel of 13 people from all over Ireland for their combined lived experience with different types and stages of dementia, across several age groups. Importantly, this means the conversation is not just about Alzheimer's disease, and not just about older people. The panel has already contributed valuably to the work of DTI by: contributing to the design process for the new network logo, advising on the website and video content, representing DTI at online conferences and workshops and providing researchers and clinicians with feedback on lay summaries of scientific papers.

In short, everything in DTI is done in collaboration with our PPI panel to ensure our work is a true co-creation. This is something I am extremely passionate about and proud of.

 What PPI means to me – reflections from DTI panellists

Kevin Quaid, aged 59, a person living with Lewy body dementia (LBD)

“Membership of the DTI PPI panel means everything to me. It ensures my voice is important and listened to. As I have become more involved in PPI, I see that increasing numbers of people, from carers to clinicians, are beginning to understand that they need to listen to the patient's voice. In having the disease, we are also experts. But the most important thing to me about being on this panel is knowing I am useful, knowing I am not a burden, knowing I am worth listening to, and knowing what I say is valued.”

Kate Murphy, aged 61, former caregiver to her late mum Margaret, who had Alzheimer’s disease

“I feel excited and privileged to be a member of the DTI PPI panel. My mum, Margaret, was diagnosed in 2009, and I cared for her for several years until she died in 2017. As the disease progressed, she reverted to speaking in Irish, the language she was educated in. Being involved with decisions that can enhance the lives of those living with dementia gives me and other PPI members a voice and hope for the future. The HRB’s funding of DTI is precious and will help to give dementia the recognition it deserves within society.”

Kate Byrne, aged 64, caregiver to her husband John who has Alzheimer’s disease, aged 80

“I am honoured to be on a panel with those seeking change and hope in what must be one of mankind’s greatest fears – a diagnosis of dementia. I have always been a very private person. I joined this panel and went public because I believe society needs to understand and respect dementia more. Understanding is about education and respect is about continuing to recognize the person at the core of a dementia diagnosis. In my case, this person is my beloved husband, John. We have encountered friends out walking who have looked the other way because they don’t know what to say. I’d like my membership of this panel to help change that.”

 

You can read the full blog post on the HRB website at this link: https://www.hrb.ie/news/blog/article/ppi-in-action/

 

 

 

Today is World Alzheimer’s Day, a global opportunity to raise awareness around, educate, encourage support and demystify dementia. It’s also an opportunity for Trinity to highlight the upcoming launch of an exciting new research network – Dementia Trials Ireland (DTI) on Tuesday 27^th September 2022. DTI is a HRB research network to enhance dementia care and outcomes.

 

Karen Meenan, PPI and Communications/Dissemination Coordinator in DTI, discusses the importance of a Public, Patient and Carer Involvement (PPI) panel to the work of Dementia Trials Ireland. PPI in research means that the public and patients are involved in planning and doing research from start to finish and help tell the public about the results of research.

 

Karen also shares reflections from some of the DTI members. This article is an extract from a longer blog-post written by Karen for the HRB website for World Alzheimer’s Day here: https://www.hrb.ie/news/blog/article/ppi-in-action/

 

DTI was formed in 2022 to enable every person in Ireland living with dementia, or at risk of developing dementia, the opportunity to access clinical trials. Its cornerstone is a PPI panel and the vision to embrace the feedback and opinion of all members. This process can be slow, but it is worth it. Simply put, consultation with people who are invested in the outcome of your work, works.

We formed a panel of 13 people from all over Ireland for their combined lived experience with different types and stages of dementia, across several age groups. Importantly, this means the conversation is not just about Alzheimer's disease, and not just about older people. The panel has already contributed valuably to the work of DTI by: contributing to the design process for the new network logo, advising on the website and video content, representing DTI at online conferences and workshops and providing researchers and clinicians with feedback on lay summaries of scientific papers.

In short, everything in DTI is done in collaboration with our PPI panel to ensure our work is a true co-creation. This is something I am extremely passionate about and proud of.

 What PPI means to me – reflections from DTI panellists

Kevin Quaid, aged 59, a person living with Lewy body dementia (LBD)

“Membership of the DTI PPI panel means everything to me. It ensures my voice is important and listened to. As I have become more involved in PPI, I see that increasing numbers of people, from carers to clinicians, are beginning to understand that they need to listen to the patient's voice. In having the disease, we are also experts. But the most important thing to me about being on this panel is knowing I am useful, knowing I am not a burden, knowing I am worth listening to, and knowing what I say is valued.”

Kate Murphy, aged 61, former caregiver to her late mum Margaret, who had Alzheimer’s disease

“I feel excited and privileged to be a member of the DTI PPI panel. My mum, Margaret, was diagnosed in 2009, and I cared for her for several years until she died in 2017. As the disease progressed, she reverted to speaking in Irish, the language she was educated in. Being involved with decisions that can enhance the lives of those living with dementia gives me and other PPI members a voice and hope for the future. The HRB’s funding of DTI is precious and will help to give dementia the recognition it deserves within society.”

Kate Byrne, aged 64, caregiver to her husband John who has Alzheimer’s disease, aged 80

“I am honoured to be on a panel with those seeking change and hope in what must be one of mankind’s greatest fears – a diagnosis of dementia. I have always been a very private person. I joined this panel and went public because I believe society needs to understand and respect dementia more. Understanding is about education and respect is about continuing to recognize the person at the core of a dementia diagnosis. In my case, this person is my beloved husband, John. We have encountered friends out walking who have looked the other way because they don’t know what to say. I’d like my membership of this panel to help change that.”

 

You can read the full blog post on the HRB website at this link: https://www.hrb.ie/news/blog/article/ppi-in-action/

 

 

 

 

• Tags:
• Health
• Research