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[Policy Recommendations] Four Perspectives on Advancing Measures for Idiopathic Normal Pressure Hydrocephalus (iNPH) (February 16, 2023)

[Policy Recommendations] Four Perspectives on Advancing Measures for Idiopathic Normal Pressure Hydrocephalus (iNPH) (February 16, 2023)

The Health and Global Policy Institute (HGPI) Dementia Policy Project formulated policy recommendations in dementia titled, “Four Perspectives on Advancing Measures for Idiopathic Normal Pressure Hydrocephalus (iNPH).” For details, please view the PDF provided bottom.


Background of these recommendations

These recommendations regarding future measures for Idiopathic Normal Pressure Hydrocephalus (iNPH) were compiled as part of an FY2022 initiative from the Health and Global Policy Institute (HGPI) Dementia Policy Project titled, “Current Issues and Future Prospects for Idiopathic Normal Pressure Hydrocephalus (iNPH) Measures – Focusing on a Form of Dementia that Improves with Treatment.” 

Projections show that the number of people living with dementia in Japan will soon exceed 7 million and hopes are high for the development of treatments that relieve the symptoms of dementia and address its underlying causes for better living later in life. Many diseases that cause dementia are considered difficult to treat, but iNPH is a form of dementia that improves with treatment. It is estimated that iNPH affects around 370,000 people, or about 5% of all people living with dementia. In recent years, we have also come to understand that iNPH often occurs alongside Alzheimer’s disease, the most common cause of dementia, so the actual number of iNPH cases likely exceeds estimates. There are many potential benefits to delivering the appropriate treatments to people with iNPH, such as longer life expectancies, fall prevention, and high returns in terms of health economics. As demonstrated by developments like the adoption of the “Research Survey on Structuring Healthcare for a Treatable Form of Dementia” as a Ministry of Health, Labour and Welfare (MHLW) Project for the Promotion of Well-Being for Elderly People in 2019, iNPH is becoming an important item on the policy agenda. However, there are scattered issues that must be addressed before iNPH treatments can be delivered to as many people as possible to improve their symptoms and elevate their quality of life. In light of these circumstances, HGPI has positioned iNPH as a key item on its agenda for dementia policy and has engaged with various parties related to iNPH including health professionals, representatives of academia and industry, and the parties most affected for multi-stakeholder discussions with industry, Government, academia, and civil society. Based on those discussions, we have formulated the following policy recommendations regarding necessary measures for iNPH with the objective of resolving the diverse issues described above with an all-of-society response.

 

Policy recommendations

Perspective 1: Promoting measures to enhance multi-stakeholder awareness during each phase

  • The need to provide information on iNPH and to broadly and actively disseminate treatment guidelines across medical departments
  • The need to expand the scope of awareness campaigns to target long-term care professionals, welfare professionals, and private businesses that support elderly people in their everyday lives
  • The need to train patient advocate leaders and provide support that energizes activities from civil society organizations, starting with patient advocacy organizations


Perspective 2: Building a healthcare provision system that achieves early intervention and high-quality diagnosis and treatment

  • The need to establish pathways from initial observations to medical consultations to enhance early detection, diagnosis, and response
  • The need to establish centers for iNPH diagnosis and treatment that are compatible with the characteristics of each community
  • The need to strengthen collaboration that spans hospitals, clinics, and multiple medical and long-term care professions to establish seamless postoperative follow-up systems


Perspective 3: Establishing a sustainable and innovative research environment that can respond to diverse needs

  • The need to secure continuous funding and to drive growth in domestic iNPH research over the medium to long term
  • The need to promote AI utilization, interdisciplinary joint research, international data sharing, and patient and public involvement (PPI) in research


Perspective 4: Exercising political leadership to ensure necessary measures are implemented in a stable and reliable manner

  • The need to mention iNPH in national strategies, starting with the National Framework for Promotion of Dementia Policies
  • The need to raise awareness toward iNPH in the legislature and to demonstrate leadership to advance future policies
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