Walking the talk for dementia: A unique immersive, embodied, and multi-experiential initiative

Fernando Aguzzoli Peres; Aline Nogueira Haas; Angga Dwi Martha; Melissa Chan; Michelle Steele; Maria Teresa Ferretti; Ntokozo N Ngcobo; Stefania Ilinca; Clara Domínguez-Vivero; Iracema Leroi; Nisha Sajnani; Eduardo R Zimmer; Alex Kornhuber; Alexandre Kalache; Berrie Holtzhausen; Catarina Tristão-Pereira; Charlèss Dupont; Dan Cohen; David de Jong; David Facal; Desmond O'Sullivan; Elaine Mateus; Enzo Roso; Evon Estrop; Giulia Gamba; Gustavo San Martin Elexpe; Hector Ulises Diaz Hernández; Helena Quaid; Ishtar Govia; João Barbosa; Joaquina García Del Moral; Johnny Miller; José Antonio García García; Kevin Quaid; Laura Navarro; Laura Zúñiga García; Laureen Waters; Lebo Molete; Maria Eugenia Godoy; Maureen Sigauke; Max William de Ataide Schulte; Peter Estrop; Priscilla San Martin Elexpe Cardoso; Randall Perez; Rianna Patterson; Ronika Chakrabarti; Ruth Wong; Sara Marsillas; Shontonese Lowe; Taida Sánchez Rego; Temitope Farombi; Theresa Montgomery; Ton In 't Veen; Valli Yanni; Wendy Weidner; Agustin Ibanez

doi:10.1002/alz.13644

Walking the talk for dementia: A unique immersive, embodied, and multi-experiential initiative

Fernando Aguzzoli Peres, Aline Nogueira Haas, Angga Dwi Martha, Melissa Chan, Michelle Steele, Maria Teresa Ferretti, Ntokozo N Ngcobo, Stefania Ilinca, Clara Domínguez-Vivero, Iracema Leroi, Nisha Sajnani, Eduardo R Zimmer, Alex Kornhuber, Alexandre Kalache, Berrie Holtzhausen, Catarina Tristão-Pereira, Charlèss Dupont, Dan Cohen, David de Jong, David FacalDesmond O'Sullivan, Elaine Mateus, Enzo Roso, Evon Estrop, Giulia Gamba, Gustavo San Martin Elexpe, Hector Ulises Diaz Hernández, Helena Quaid, Ishtar Govia, João Barbosa, Joaquina García Del Moral, Johnny Miller, José Antonio García García, Kevin Quaid, Laura Navarro, Laura Zúñiga García, Laureen Waters, Lebo Molete, Maria Eugenia Godoy, Maureen Sigauke, Max William de Ataide Schulte, Peter Estrop, Priscilla San Martin Elexpe Cardoso, Randall Perez, Rianna Patterson, Ronika Chakrabarti, Ruth Wong, Sara Marsillas, Shontonese Lowe, Taida Sánchez Rego, Temitope Farombi, Theresa Montgomery, Ton In 't Veen, Valli Yanni, Wendy Weidner, Agustin Ibanez

Research output: Contribution to journal › Article › peer-review

3 Citations (Scopus)

50 Downloads (Pure)

Abstract

Coping with dementia requires an integrated approach encompassing personal, health, research, and community domains. Here we describe "Walking the Talk for Dementia," an immersive initiative aimed at empowering people with dementia, enhancing dementia understanding, and inspiring collaborations. This initiative involved 300 participants from 25 nationalities, including people with dementia, care partners, clinicians, policymakers, researchers, and advocates for a 4-day, 40 km walk through the Camino de Santiago de Compostela, Spain. A 2-day symposium after the journey provided novel transdisciplinary and horizontal structures, deconstructing traditional hierarchies. The innovation of this initiative lies in its ability to merge a physical experience with knowledge exchange for diversifying individuals' understanding of dementia. It showcases the transformative potential of an immersive, embodied, and multi-experiential approach to address the complexities of dementia collaboratively. The initiative offers a scalable model to enhance understanding, decrease stigma, and promote more comprehensive and empathetic dementia care and research.

Original language	English
Pages (from-to)	2309-2322
Number of pages	14
Journal	Alzheimer's & Dementia
Volume	20
Issue number	3
Early online date	26 Jan 2024
DOIs	https://doi.org/10.1002/alz.13644
Publication status	Published - Mar 2024

Bibliographical note

© 2024 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.

Funding Information:
Walking the Talk for Dementia 2023 received funding from Atlantic Philanthropy, ISTAART, and GBHI to support travels and logistics. The project had the main support of the Association “Crônicos do Dia a Dia,” a Brazilian nonprofit organization dedicated to individuals with chronic diagnoses. The event also received funding and collaboration from BrainLat, Galician Society of Neurology, Abanca Foundation, Alzheimer Galicia Federation, and San Francisco Hotel. A.I. is partially supported by grants from ANID/FONDECYT Regular (1210195, 1210176, and 1220995); ANID/FONDAP/15150012; ANID/PIA/ANILLOS ACT210096; FONDEF ID20I10152, ANID/FONDAP 15150012; Takeda CW2680521 and the MULTI‐PARTNER CONSORTIUM TO EXPAND DEMENTIA RESEARCH IN LATIN AMERICA [ReDLat, supported by Fogarty International Center (FIC) and National Institutes of Health, National Institutes of Aging (R01 AG057234, R01 AG075775, R01 AG21051, R01 AG083799, CARDS‐NIH), Alzheimer's Association (SG‐20‐725707), Rainwater Charitable foundation – Tau Consortium, the Bluefield Project to Cure Frontotemporal Dementia, and Global Brain Health Institute)]. The contents of this publication are solely the responsibility of the authors and do not represent the official views of these institutions. The funders had no role in study design, data collection and analysis, the decision to publish, or manuscript preparation. We used a large language model to integrate the Survey's opinions and detect language typos.

Publisher Copyright:
© 2024 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.

Access to Document

10.1002/alz.13644Licence: CC BY-NC

2024_AguzzoliPeresF_AlzheimersDementAccepted author manuscript, 768 KBLicence: CC BY
2024_AguzzoliPeresFA_AlzheimersDementFinal published version, 2.16 MBLicence: CC BY-NC

Cite this

Aguzzoli Peres, F., Haas, A. N., Martha, A. D., Chan, M., Steele, M., Ferretti, M. T., Ngcobo, N. N., Ilinca, S., Domínguez-Vivero, C., Leroi, I., Sajnani, N., Zimmer, E. R., Kornhuber, A., Kalache, A., Holtzhausen, B., Tristão-Pereira, C., Dupont, C., Cohen, D., de Jong, D., ... Ibanez, A. (2024). Walking the talk for dementia: A unique immersive, embodied, and multi-experiential initiative. Alzheimer's & Dementia, 20(3), 2309-2322. https://doi.org/10.1002/alz.13644

@article{f536e79b5cef40c4a0297062b29b784d,

title = "Walking the talk for dementia: A unique immersive, embodied, and multi-experiential initiative",

abstract = "Coping with dementia requires an integrated approach encompassing personal, health, research, and community domains. Here we describe {"}Walking the Talk for Dementia,{"} an immersive initiative aimed at empowering people with dementia, enhancing dementia understanding, and inspiring collaborations. This initiative involved 300 participants from 25 nationalities, including people with dementia, care partners, clinicians, policymakers, researchers, and advocates for a 4-day, 40 km walk through the Camino de Santiago de Compostela, Spain. A 2-day symposium after the journey provided novel transdisciplinary and horizontal structures, deconstructing traditional hierarchies. The innovation of this initiative lies in its ability to merge a physical experience with knowledge exchange for diversifying individuals' understanding of dementia. It showcases the transformative potential of an immersive, embodied, and multi-experiential approach to address the complexities of dementia collaboratively. The initiative offers a scalable model to enhance understanding, decrease stigma, and promote more comprehensive and empathetic dementia care and research.",

author = "{Aguzzoli Peres}, Fernando and Haas, {Aline Nogueira} and Martha, {Angga Dwi} and Melissa Chan and Michelle Steele and Ferretti, {Maria Teresa} and Ngcobo, {Ntokozo N} and Stefania Ilinca and Clara Dom{\'i}nguez-Vivero and Iracema Leroi and Nisha Sajnani and Zimmer, {Eduardo R} and Alex Kornhuber and Alexandre Kalache and Berrie Holtzhausen and Catarina Trist{\~a}o-Pereira and Charl{\`e}ss Dupont and Dan Cohen and {de Jong}, David and David Facal and Desmond O'Sullivan and Elaine Mateus and Enzo Roso and Evon Estrop and Giulia Gamba and {San Martin Elexpe}, Gustavo and {Ulises Diaz Hern{\'a}ndez}, Hector and Helena Quaid and Ishtar Govia and Jo{\~a}o Barbosa and {Garc{\'i}a Del Moral}, Joaquina and Johnny Miller and {Garc{\'i}a Garc{\'i}a}, {Jos{\'e} Antonio} and Kevin Quaid and Laura Navarro and Garc{\'i}a, {Laura Z{\'u}{\~n}iga} and Laureen Waters and Lebo Molete and Godoy, {Maria Eugenia} and Maureen Sigauke and {de Ataide Schulte}, {Max William} and Peter Estrop and {San Martin Elexpe Cardoso}, Priscilla and Randall Perez and Rianna Patterson and Ronika Chakrabarti and Ruth Wong and Sara Marsillas and Shontonese Lowe and Rego, {Taida S{\'a}nchez} and Temitope Farombi and Theresa Montgomery and {In 't Veen}, Ton and Valli Yanni and Wendy Weidner and Agustin Ibanez",

note = "{\textcopyright} 2024 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association. Funding Information: Walking the Talk for Dementia 2023 received funding from Atlantic Philanthropy, ISTAART, and GBHI to support travels and logistics. The project had the main support of the Association “Cr{\^o}nicos do Dia a Dia,” a Brazilian nonprofit organization dedicated to individuals with chronic diagnoses. The event also received funding and collaboration from BrainLat, Galician Society of Neurology, Abanca Foundation, Alzheimer Galicia Federation, and San Francisco Hotel. A.I. is partially supported by grants from ANID/FONDECYT Regular (1210195, 1210176, and 1220995); ANID/FONDAP/15150012; ANID/PIA/ANILLOS ACT210096; FONDEF ID20I10152, ANID/FONDAP 15150012; Takeda CW2680521 and the MULTI‐PARTNER CONSORTIUM TO EXPAND DEMENTIA RESEARCH IN LATIN AMERICA [ReDLat, supported by Fogarty International Center (FIC) and National Institutes of Health, National Institutes of Aging (R01 AG057234, R01 AG075775, R01 AG21051, R01 AG083799, CARDS‐NIH), Alzheimer's Association (SG‐20‐725707), Rainwater Charitable foundation – Tau Consortium, the Bluefield Project to Cure Frontotemporal Dementia, and Global Brain Health Institute)]. The contents of this publication are solely the responsibility of the authors and do not represent the official views of these institutions. The funders had no role in study design, data collection and analysis, the decision to publish, or manuscript preparation. We used a large language model to integrate the Survey's opinions and detect language typos. Publisher Copyright: {\textcopyright} 2024 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.",

year = "2024",

month = mar,

doi = "10.1002/alz.13644",

language = "English",

volume = "20",

pages = "2309--2322",

journal = "Alzheimer's & Dementia",

issn = "1552-5260",

publisher = "Elsevier",

number = "3",

}

Aguzzoli Peres, F, Haas, AN, Martha, AD, Chan, M, Steele, M, Ferretti, MT, Ngcobo, NN, Ilinca, S, Domínguez-Vivero, C, Leroi, I, Sajnani, N, Zimmer, ER, Kornhuber, A, Kalache, A, Holtzhausen, B, Tristão-Pereira, C, Dupont, C, Cohen, D, de Jong, D, Facal, D, O'Sullivan, D, Mateus, E, Roso, E, Estrop, E, Gamba, G, San Martin Elexpe, G, Ulises Diaz Hernández, H, Quaid, H, Govia, I, Barbosa, J, García Del Moral, J, Miller, J, García García, JA, Quaid, K, Navarro, L, García, LZ, Waters, L, Molete, L, Godoy, ME, Sigauke, M, de Ataide Schulte, MW, Estrop, P, San Martin Elexpe Cardoso, P, Perez, R, Patterson, R, Chakrabarti, R, Wong, R, Marsillas, S, Lowe, S, Rego, TS, Farombi, T, Montgomery, T, In 't Veen, T, Yanni, V, Weidner, W & Ibanez, A 2024, 'Walking the talk for dementia: A unique immersive, embodied, and multi-experiential initiative', Alzheimer's & Dementia, vol. 20, no. 3, pp. 2309-2322. https://doi.org/10.1002/alz.13644

TY - JOUR

T1 - Walking the talk for dementia

T2 - A unique immersive, embodied, and multi-experiential initiative

AU - Aguzzoli Peres, Fernando

AU - Haas, Aline Nogueira

AU - Martha, Angga Dwi

AU - Chan, Melissa

AU - Steele, Michelle

AU - Ferretti, Maria Teresa

AU - Ngcobo, Ntokozo N

AU - Ilinca, Stefania

AU - Domínguez-Vivero, Clara

AU - Leroi, Iracema

AU - Sajnani, Nisha

AU - Zimmer, Eduardo R

AU - Kornhuber, Alex

AU - Kalache, Alexandre

AU - Holtzhausen, Berrie

AU - Tristão-Pereira, Catarina

AU - Dupont, Charlèss

AU - Cohen, Dan

AU - de Jong, David

AU - Facal, David

AU - O'Sullivan, Desmond

AU - Mateus, Elaine

AU - Roso, Enzo

AU - Estrop, Evon

AU - Gamba, Giulia

AU - San Martin Elexpe, Gustavo

AU - Ulises Diaz Hernández, Hector

AU - Quaid, Helena

AU - Govia, Ishtar

AU - Barbosa, João

AU - García Del Moral, Joaquina

AU - Miller, Johnny

AU - García García, José Antonio

AU - Quaid, Kevin

AU - Navarro, Laura

AU - García, Laura Zúñiga

AU - Waters, Laureen

AU - Molete, Lebo

AU - Godoy, Maria Eugenia

AU - Sigauke, Maureen

AU - de Ataide Schulte, Max William

AU - Estrop, Peter

AU - San Martin Elexpe Cardoso, Priscilla

AU - Perez, Randall

AU - Patterson, Rianna

AU - Chakrabarti, Ronika

AU - Wong, Ruth

AU - Marsillas, Sara

AU - Lowe, Shontonese

AU - Rego, Taida Sánchez

AU - Farombi, Temitope

AU - Montgomery, Theresa

AU - In 't Veen, Ton

AU - Yanni, Valli

AU - Weidner, Wendy

AU - Ibanez, Agustin

N1 - © 2024 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association. Funding Information: Walking the Talk for Dementia 2023 received funding from Atlantic Philanthropy, ISTAART, and GBHI to support travels and logistics. The project had the main support of the Association “Crônicos do Dia a Dia,” a Brazilian nonprofit organization dedicated to individuals with chronic diagnoses. The event also received funding and collaboration from BrainLat, Galician Society of Neurology, Abanca Foundation, Alzheimer Galicia Federation, and San Francisco Hotel. A.I. is partially supported by grants from ANID/FONDECYT Regular (1210195, 1210176, and 1220995); ANID/FONDAP/15150012; ANID/PIA/ANILLOS ACT210096; FONDEF ID20I10152, ANID/FONDAP 15150012; Takeda CW2680521 and the MULTI‐PARTNER CONSORTIUM TO EXPAND DEMENTIA RESEARCH IN LATIN AMERICA [ReDLat, supported by Fogarty International Center (FIC) and National Institutes of Health, National Institutes of Aging (R01 AG057234, R01 AG075775, R01 AG21051, R01 AG083799, CARDS‐NIH), Alzheimer's Association (SG‐20‐725707), Rainwater Charitable foundation – Tau Consortium, the Bluefield Project to Cure Frontotemporal Dementia, and Global Brain Health Institute)]. The contents of this publication are solely the responsibility of the authors and do not represent the official views of these institutions. The funders had no role in study design, data collection and analysis, the decision to publish, or manuscript preparation. We used a large language model to integrate the Survey's opinions and detect language typos. Publisher Copyright: © 2024 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.

PY - 2024/3

Y1 - 2024/3

N2 - Coping with dementia requires an integrated approach encompassing personal, health, research, and community domains. Here we describe "Walking the Talk for Dementia," an immersive initiative aimed at empowering people with dementia, enhancing dementia understanding, and inspiring collaborations. This initiative involved 300 participants from 25 nationalities, including people with dementia, care partners, clinicians, policymakers, researchers, and advocates for a 4-day, 40 km walk through the Camino de Santiago de Compostela, Spain. A 2-day symposium after the journey provided novel transdisciplinary and horizontal structures, deconstructing traditional hierarchies. The innovation of this initiative lies in its ability to merge a physical experience with knowledge exchange for diversifying individuals' understanding of dementia. It showcases the transformative potential of an immersive, embodied, and multi-experiential approach to address the complexities of dementia collaboratively. The initiative offers a scalable model to enhance understanding, decrease stigma, and promote more comprehensive and empathetic dementia care and research.

AB - Coping with dementia requires an integrated approach encompassing personal, health, research, and community domains. Here we describe "Walking the Talk for Dementia," an immersive initiative aimed at empowering people with dementia, enhancing dementia understanding, and inspiring collaborations. This initiative involved 300 participants from 25 nationalities, including people with dementia, care partners, clinicians, policymakers, researchers, and advocates for a 4-day, 40 km walk through the Camino de Santiago de Compostela, Spain. A 2-day symposium after the journey provided novel transdisciplinary and horizontal structures, deconstructing traditional hierarchies. The innovation of this initiative lies in its ability to merge a physical experience with knowledge exchange for diversifying individuals' understanding of dementia. It showcases the transformative potential of an immersive, embodied, and multi-experiential approach to address the complexities of dementia collaboratively. The initiative offers a scalable model to enhance understanding, decrease stigma, and promote more comprehensive and empathetic dementia care and research.

UR - http://www.scopus.com/inward/record.url?scp=85183638164&partnerID=8YFLogxK

U2 - 10.1002/alz.13644

DO - 10.1002/alz.13644

M3 - Article

C2 - 38275208

SN - 1552-5260

VL - 20

SP - 2309

EP - 2322

JO - Alzheimer's & Dementia

JF - Alzheimer's & Dementia

IS - 3

ER -

Walking the talk for dementia: A unique immersive, embodied, and multi-experiential initiative

Abstract

Bibliographical note

Access to Document

Other files and links

Fingerprint

SRP69: SRP-Onderzoekszwaartepunt: Addressing the challenges around serious illness, palliative care and the end of life: public health, health services and clinical innovations

FWOSBO29: SBO project with a primary societal finality: CAPACITY: Flanders Project to Develop Capacity in Palliative Care Across Society

Cite this

Walking the talk for dementia: A unique immersive, embodied, and multi-experiential initiative

Abstract

Bibliographical note

Access to Document

Other files and links

Fingerprint

Projects

SRP69: SRP-Onderzoekszwaartepunt: Addressing the challenges around serious illness, palliative care and the end of life: public health, health services and clinical innovations

FWOSBO29: SBO project with a primary societal finality: CAPACITY: Flanders Project to Develop Capacity in Palliative Care Across Society

Cite this