DESK REVIEWS | 04.03.03. (How) are people with dementia and their family (unpaid) carers recognised in the policy document?

DESK REVIEW | 04.03.03. (How) are people with dementia and their family (unpaid) carers recognised in the policy document?

The Law Project number 4364/2020 entitled “The National Policy for Integrated Care for People Living with Alzheimer’s Disease and other Dementias” recognizes people living with dementia and their carers and tries to provide psychological, social, and clinical support for these persons. In the “Technical Guidelines for Implementing a Healthcare Pathway for Integral Health for Older People” (Brazilian Ministry of Health, 2018e) dementia is recognised as a threat to independent life, strongly impacting on people, family, and carer’s quality of life.

References:

Brazilian Ministry of Health. (2018e). Orientações Técnicas para a Implementação de Linha de Cuidado para Atenção integral à Saúde da Pessoa Idosa no Sistema Único de Saúde—SUS. Ministério da Saúde do Brasil.

 

People with dementia and their family carers are recognised in all action plans. However, the second action plan, advocacy on human rights for people with dementia and their carers specifically call for their recognition as part of its achievement indicators, which include protection of people with dementia through existing regulations and formation of support group for people with dementia and their carers.

The other action plans advise on development of a guidebook and a training programme to educate carers and people with dementia about dementia as well as the planning of financial strategies and improvement of services (including implementation of standards for older people, an effective referral system, and an increase in the quantity and quality of day and home care) (Ministry of Health Republic of Indonesia, 2015b).

References:

Ministry of Health Republic of Indonesia. (2015b). National Strategy: Management of Alzheimer and Other Dementia Diseases: Towards Healthy and Productive Older Persons. Ministry of Health Republic of Indonesia.

People with dementia are recognised in the following lines of action (Gutiérrez-Robledo & Arrieta-Cruz, 2014):

  1. Educational programs on the rights of people at the end of life, including topics such as testaments and advance directives.
  2. Legal, social, and financial assistance to prevent abuse, violence, or neglect in the care of the person with dementia.
  3. Financial support, especially for people with limited economic resources.

The family of the person with dementia is recognised in the following lines of action:

  1. To develop a model of training, evaluation, and care for primary caregivers and family members.
  2. To promote family guidance for better care and management of their family members affected by dementia.
  3. To create programs and training for family members and health personnel in palliative care.
  4. To establish facilities for the family primary caregiver.
  5. To develop psychological and spiritual support programs.
  6. To subsidise or low-cost programmes for funeral and purchase of essential medicines in palliative care at home (e.g., for pain control).
  7. To create respite care units for primary caregivers.
References:

Gutiérrez-Robledo, L., & Arrieta-Cruz, I. (2014). Plan de Acción Alzheimer y otras demencias, México 2014. http://diariote.mx/docs/plan_alzheimer_WEB.pdf