Sustainable Improvements in Dementia Care for an Expectably Increasing Number of Dementia People: Challenges and Opportunities
Main Article Content
Abstract
Background: Aging, low literacy, and vascular risk factors are agents to boost or maintain the numbers, with more and more elevated costs for informal caregivers and society. Widely public health priority recognition implies changes and challenges in some European countries involving political engagement, needs that in dementia care are unmet. A preliminary diagnosis of the gaps and a prioritization of strategies to be implemented in Portugal should be addressed. The World Health Organization framework for meaningful engagement could work, as it has already done for other chronic diseases to reach some of the goals to improve healthcare.
Methods: A review of the current situation and some of the initiatives delivered through healthcare professionals with recognized experience in dementia areas and patients’ associations, in a South Europe country over the last few years. In view of the remaining gaps, proposals from the literature will be provided to improve care experiences.
Conclusion: We defend that is essential that Portugal deepen patient-centered care, integrated care pathways, and equal access for rural or marginalized populations to specialist assessment for an early diagnosis. Improving the quality of dementia care in care homes or managing a dementia care program to link resources for patients and caregivers, are key themes that need proactive preparation for the coming years. We present 8 recommendations for dementia care in Portugal.
Keywords:
Dementia, Alzheimer, Health Policies, Clinical Pathway, Person-centered Care
Article Details
How to Cite
VALVERDE, Ana Maria Herrero et al.
Sustainable Improvements in Dementia Care for an Expectably Increasing Number of Dementia People: Challenges and Opportunities.
Medical Research Archives, [S.l.], v. 11, n. 10, oct. 2023.
ISSN 2375-1924.
Available at: <https://esmed.org/MRA/mra/article/view/4518>. Date accessed: 16 may 2024.
doi: https://doi.org/10.18103/mra.v11i10.4518.
Section
Review Articles
The Medical Research Archives grants authors the right to publish and reproduce the unrevised contribution in whole or in part at any time and in any form for any scholarly non-commercial purpose with the condition that all publications of the contribution include a full citation to the journal as published by the Medical Research Archives.
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33. World Health Organization. Mental Health Crisis Services: Promoting Person-Centred and Rights-Based Approaches.; 2021.
34. Vojtila L, Ashfaq I, Ampofo A, Dawson D, Selby P. Engaging a person with lived experience of mental illness in a collaborative care model feasibility study. Res Involv Engagem. 2021;7(1):5. doi:10.1186/s40900-020-00247-w
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41. Brodaty H, Jeon Y-H, Gresham M, et al. Non-Pharmacological Interventions for People Living with Dementia as Part of Post-Diagnostico Care.; 2022.
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49. World Health Organization. A Blueprint for Dementia Research. Accessed May 31, 2023. https://www.who.int/publications/i/item/9789240058248
50. Lee L, Hillier LM, Heckman G, et al. Primary Care–Based Memory Clinics: Expanding Capacity for Dementia Care. Can J Aging. 2014;33(3):307-319. doi:10.1017/S0714980814000233
51. Wong WWL, Lee L, Walker S, et al. Cost-utility analysis of a multispecialty interprofessional team dementia care model in Ontario, Canada. BMJ Open. 2023;13(4):e064882. doi:10.1136/bmjopen-2022-064882
52. World Health Organization. Global Action Plan on the Public Health Response to Dementia 2017 - 2025.; 2017.
53. American Geriatrics Society Expert Panel on Person-Centered Care. Person-Centered Care: A Definition and Essential Elements. J Am Geriatr Soc. 2016;64(1):15-18. doi:10.1111/jgs.13866
54. Lee L, Molnar F, Hillier LM, Patel T, Slonim K. Multispecialty Interprofessional Team Memory Clinics: Enhancing Collaborative Practice and Health Care Providers’ Experience of Dementia Care. Can J Aging. 2022;41(1):96-109. doi:10.1017/S0714980821000052
55. Lundy J, Hayden D, Pyland S, Berg‐Weger M, Malmstrom TK, Morley JE. An Age‐Friendly Health System. J Am Geriatr Soc. 2021;69(3):806-812. doi:10.1111/jgs.16959
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58. Commonwealth of Australia. The Aged Care Quality Standards.; 2019.
59. Surr CA, Parveen S, Smith SJ, et al. The barriers and facilitators to implementing dementia education and training in health and social care services: a mixed-methods study. BMC Health Serv Res. 2020;20(1):512. doi:10.1186/s12913-020-05382-4
60. Pot AM, Petrea I. Improving Dementia Care Worldwide. Ideas and Advise on Developing and Implementing a National Dementia Plan.; 2013.
61. Livingston G, Huntley J, Sommerlad A, et al. Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet. 2020;396(10248):413-446. doi:10.1016/S0140-6736(20)30367-6
62. Ngandu T, Lehtisalo J, Solomon A, et al. A 2 year multidomain intervention of diet, exercise, cognitive training, and vascular risk monitoring versus control to prevent cognitive decline in at-risk elderly people (FINGER): a randomised controlled trial. The Lancet. 2015;385(9984):2255-2263. doi:10.1016/S0140-6736(15)60461-5
63. World Health Organization. Global Status Report on the Public Health Response to Dementia.; 2021.
64. Cummings J. Anti-Amyloid Monoclonal Antibodies for the Treatment of Alzheimer’s Disease.; 2022.
2. Wimo A, Seeher K, Cataldi R, et al. The worldwide costs of dementia in 2019. Alzheimer’s & Dementia. Published online January 8, 2023. doi:10.1002/alz.12901
3. Gonçalves-Pereira M, Verdelho A, Prina M, Marques MJ, Xavier M. How Many People Live with Dementia in Portugal? A Discussion Paper of National Estimates. Portuguese Journal of Public Health. 2021;39(1):58-68. doi:10.1159/000516503
4. World Health Organization. WHO Framework for Meaningful Engagement of People Living with Noncommunicable Diseases, and Mental Health and Neurological Conditions.; 2023.
5. World Health Organization. Intersectoral global action plan on epilepsy and other neurological disorders 2022-2031. Published online 2023.
6. Gonçalves-Pereira M, Cardoso A, Verdelho A, et al. The prevalence of dementia in a Portuguese community sample: a 10/66 Dementia Research Group study. BMC Geriatr. 2017;17(1):261. doi:10.1186/s12877-017-0647-5
7. Ruano L, Araújo N, Branco M, et al. Prevalence and Causes of Cognitive Impairment and Dementia in a Population-Based Cohort From Northern Portugal. American Journal of Alzheimer’s Disease & Other Dementiasr. 2019;34(1):49-56. doi:10.1177/1533317518813550
8. Santana I, Farinha F, Freitas S, Rodrigues V, Carvalho Á. Epidemiologia da Demência e da Doença de Alzheimer em Portugal: Estimativas da Prevalência e dos Encargos Financeiros com a Medicação. Acta Med Port. 2015;28(2):182-188. doi:10.20344/amp.6025
9. Prince M, Comas-Herrera A, Knapp M, Guerchet M, Karagiannidou M. World Alzheimer Report 2016: Improving Healthcare for People Living with Dementia: Coverage, Quality and Costs Now and in the Future Report Improving Healthcare for People Living with Dementia Coverage, QualIty and Costs Now and In the Future.; 2016.
10. Alzheimer Europe. Comparing and Benchmarking National Dementia Strategies and Policies.; 2017. www.un.org
11. Burns A, Robert P. Dementia Care: International Perspectives. Oxford; 2019.
12. Ribeiro O, Fernandes L, Firmino H, Simões MR, Paúl C. Geropsychology and psychogeriatrics in Portugal: research, education and clinical training. Int Psychogeriatr. 2010;22(6):854-863. doi:10.1017/S1041610210000347
13. Fernandes L, Mateos R, Engedal K, et al. The state of psychogeriatrics in Europe: challenges and opportunities in six European countries. Int Psychogeriatr. 2015;27(8):1243-1246. doi:10.1017/S1041610214002191
14. Houghton C, Murphy K, Brooker D, Casey D. Healthcare staffs’ experiences and perceptions of caring for people with dementia in the acute setting: Qualitative evidence synthesis. Int J Nurs Stud. 2016;61:104-116. doi:10.1016/j.ijnurstu.2016.06.001
15. Caldas de Almeida M, et al. Projeto VIDAS — Valorização e Inovação Em Demências (POPH/QREN 2013-15).; 2015.
16. Saúde - Gabinete do Secretário de Estado Adjunto e da Saúde. Diário da República n.o 116/2018, Série II de 2018-06-19. Published online 2018.
17. Direção-Geral da Saúde Portugal. NORMA CLÍNICA: 053/2011. Atualização. Abordagem Diagnóstica e Terapêutica Do Doente Com Declínio Cognitivo Ou Demência.; 2023. www.dgs.pt
18. Gauthier S, Webster C, Servaes S, Morais JA, Rosa-Neto P. World Alzheimer Report 2022: Life after Diagnosis: Navigating Treatment, Care and Support.; 2022.
19. Nicaise S, Palermiti F, Monegasque Association for research on Alzheimer’s disease (AMPA). ALZHEIMER AND THE MEDITERRANEAN REPORT 2016. OVERVIEW-CHALLENGES-PERSPECTIVES.; 2016.
20. Direção-Geral da Saúde Portugal. PORTUGAL: Saúde Mental Em Números - 2015. Programa Nacional Para a Saúde Mental.; 2015.
21. Kerpershoek L, de Vugt M, Wolfs C, et al. Access to timely formal dementia care in Europe: protocol of the Actifcare (ACcess to Timely Formal Care) study. BMC Health Serv Res. 2016;16(1):423. doi:10.1186/s12913-016-1672-3
22. Kurz A, Bakker C, Böhm M, et al. RHAPSODY – Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study. Int Psychogeriatr. 2016;28(12):2091-2099. doi:10.1017/S1041610216001186
23. Lang L, Clifford A, Wei L, et al. Prevalence and determinants of undetected dementia in the community: a systematic literature review and a meta-analysis. BMJ Open. 2017;7(2):e011146. doi:10.1136/bmjopen-2016-011146
24. Abramsohn EM, Jerome J, Paradise K, Kostas T, Spacht WA, Lindau ST. Community resource referral needs among African American dementia caregivers in an urban community: a qualitative study. BMC Geriatr. 2019;19(1):311. doi:10.1186/s12877-019-1341-6
25. Clare L, Gamble LD, Martyr A, et al. Psychological processes in adapting to dementia: Illness representations among the IDEAL cohort. Psychol Aging. 2022;37(4):524-541. doi:10.1037/pag0000650
26. Bertrand E, Landeira-Fernandez J, Mograbi D. L’impact psychosocial de l’anosognosie dans la démence de type Alzheimer. Rev Ibero Am Gerontol. 2013;2:52-69.
27. Khanassov V, Rojas-Rozo L, Sourial R, Yang XQ, Vedel I. Needs of patients with dementia and their caregivers in primary care: lessons learned from the Alzheimer plan of Quebec. BMC Fam Pract. 2021;22(1):186. doi:10.1186/s12875-021-01528-3
28. Khanassov V, Vedel I, Pluye P. Barriers to Implementation of Case Management for Patients With Dementia: A Systematic Mixed Studies Review. The Annals of Family Medicine. 2014;12(5):456-465. doi:10.1370/afm.1677
29. Scheltens P, De Strooper B, Kivipelto M, et al. Alzheimer’s disease. The Lancet. 2021;397(10284):1577-1590. doi:10.1016/S0140-6736(20)32205-4
30. Cummings J, Rabinovici GD, Atri A, et al. Aducanumab: Appropriate Use Recommendations Update. J Prev Alzheimers Dis. Published online 2022. doi:10.14283/jpad.2022.34
31. Lin P, Cohen JT, Neumann PJ. Preparing the health‐care system to pay for new Alzheimer’s drugs. Alzheimer’s & Dementia. 2020;16(11):1568-1570. doi:10.1002/alz.12155
32. World Health Organization. Thirteenth General Programme of Work, 2019–2023: Promote Health, Keep the World Safe, Serve the Vulnerable.; 2019.
33. World Health Organization. Mental Health Crisis Services: Promoting Person-Centred and Rights-Based Approaches.; 2021.
34. Vojtila L, Ashfaq I, Ampofo A, Dawson D, Selby P. Engaging a person with lived experience of mental illness in a collaborative care model feasibility study. Res Involv Engagem. 2021;7(1):5. doi:10.1186/s40900-020-00247-w
35. Feigin VL, Nichols E, Alam T, et al. Global, regional, and national burden of neurological disorders, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18(5):459-480. doi:10.1016/S1474-4422(18)30499-X
36. World Health Organization. Atlas: Country Resources for Neurological Disorders, 2nd Ed.; 2017.
37. World Dementia Council. World Dementia Council Global Care Statement: Statement on Importance of Care and Support.; 2017.
38. Dewing J, Dijk S. What is the current state of care for older people with dementia in general hospitals? A literature review. Dementia. 2016;15(1):106-124. doi:10.1177/1471301213520172
39. Daley S, Williams M. Innovative Dementia Education Programs for Undergraduate Healthcare Students,.; 2022.
40. Rosenthal MB. Novel Alzheimer Disease Treatments and Reconsideration of US Pharmaceutical Reimbursement Policy. JAMA. Published online July 17, 2023. doi:10.1001/jama.2023.11702
41. Brodaty H, Jeon Y-H, Gresham M, et al. Non-Pharmacological Interventions for People Living with Dementia as Part of Post-Diagnostico Care.; 2022.
42. Widera EW, Brangman SA, Chin NA. Ushering in a New Era of Alzheimer Disease Therapy. JAMA. Published online July 17, 2023. doi:10.1001/jama.2023.11701
43. Portuguese Government. Diário da República n.o 251/2021, 1o Suplemento, Série I de 2021-12-29. Published online 2021.
44. Dresden SM, Taylor Z, Serina P, et al. Optimal Emergency Department Care Practices for Persons Living With Dementia: A Scoping Review. J Am Med Dir Assoc. 2022;23(8):1314.e1-1314.e29. doi:10.1016/j.jamda.2022.05.024
45. Abstract 80275 (Finger-prick blood test). Alzheimer’s Association International Conference (AAIC) 2023. Published online July 19, 2023.
46. Abstract 78819 (Primary care). Alzheimer’s Association International Conference (AAIC) 2023. Published online July 19, 2023.
47. World Health Organization. Global Expenditure on Health: Public Spending on the Rise?; 2021.
48. Tedim Cruz V, Pais J, Ruano L, et al. Implementation and Outcomes of a Collaborative Multi-Center Network Aimed at Web-Based Cognitive Training – COGWEB Network. JMIR Ment Health. 2014;1(1):e2. doi:10.2196/mental.3840
49. World Health Organization. A Blueprint for Dementia Research. Accessed May 31, 2023. https://www.who.int/publications/i/item/9789240058248
50. Lee L, Hillier LM, Heckman G, et al. Primary Care–Based Memory Clinics: Expanding Capacity for Dementia Care. Can J Aging. 2014;33(3):307-319. doi:10.1017/S0714980814000233
51. Wong WWL, Lee L, Walker S, et al. Cost-utility analysis of a multispecialty interprofessional team dementia care model in Ontario, Canada. BMJ Open. 2023;13(4):e064882. doi:10.1136/bmjopen-2022-064882
52. World Health Organization. Global Action Plan on the Public Health Response to Dementia 2017 - 2025.; 2017.
53. American Geriatrics Society Expert Panel on Person-Centered Care. Person-Centered Care: A Definition and Essential Elements. J Am Geriatr Soc. 2016;64(1):15-18. doi:10.1111/jgs.13866
54. Lee L, Molnar F, Hillier LM, Patel T, Slonim K. Multispecialty Interprofessional Team Memory Clinics: Enhancing Collaborative Practice and Health Care Providers’ Experience of Dementia Care. Can J Aging. 2022;41(1):96-109. doi:10.1017/S0714980821000052
55. Lundy J, Hayden D, Pyland S, Berg‐Weger M, Malmstrom TK, Morley JE. An Age‐Friendly Health System. J Am Geriatr Soc. 2021;69(3):806-812. doi:10.1111/jgs.16959
56. Skills for Health, Health Education England, Skills for Care. Dementia Training Standards Framework.; 2018.
57. Scottish Government. Promoting Excellence: A framework for all health and social services staff working with people with dementia, their families and carers. Published online 2010.
58. Commonwealth of Australia. The Aged Care Quality Standards.; 2019.
59. Surr CA, Parveen S, Smith SJ, et al. The barriers and facilitators to implementing dementia education and training in health and social care services: a mixed-methods study. BMC Health Serv Res. 2020;20(1):512. doi:10.1186/s12913-020-05382-4
60. Pot AM, Petrea I. Improving Dementia Care Worldwide. Ideas and Advise on Developing and Implementing a National Dementia Plan.; 2013.
61. Livingston G, Huntley J, Sommerlad A, et al. Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet. 2020;396(10248):413-446. doi:10.1016/S0140-6736(20)30367-6
62. Ngandu T, Lehtisalo J, Solomon A, et al. A 2 year multidomain intervention of diet, exercise, cognitive training, and vascular risk monitoring versus control to prevent cognitive decline in at-risk elderly people (FINGER): a randomised controlled trial. The Lancet. 2015;385(9984):2255-2263. doi:10.1016/S0140-6736(15)60461-5
63. World Health Organization. Global Status Report on the Public Health Response to Dementia.; 2021.
64. Cummings J. Anti-Amyloid Monoclonal Antibodies for the Treatment of Alzheimer’s Disease.; 2022.