Life after diagnosis: Navigating treatment, care and support
The World Alzheimer Report 2022 is dedicated to the vast topic of post-diagnosis support – an umbrella term encompassing the variety of official and informal services and information aimed at promoting the health, social, and psychological wellbeing of people with dementia and their carers after a diagnosis.
ADI estimates that 75% of people with dementia are not diagnosed globally, with that rate believed to rise as high as 90% in some lower- and middle-income countries. But diagnosis is only the first, albeit arduous, step on the journey. Post-diagnosis support is often a daunting field to navigate, particularly when the systems meant to provide such support are confusing, limited, or outright non-existent depending on where one lives.
A companion to last year’s World Alzheimer Report report, ‘Journey through the diagnosis of dementia‘, ‘Life after diagnosis: Navigating treatment, care and support‘ explores the many facets of life for people with dementia, their carers, and healthcare professionals following a diagnosis of dementia through 119 essays across 24 chapters, written by experts from around the world – whether they be researchers, health and social care professionals, informal carers, or people living with dementia speaking from experience.
These essays are underpinned by a survey that weaves in the voices of ‘real people’ living with dementia, their carers, and care professionals.
Some of the key issues covered in the report include:
- Understanding the significance of staging dementia, the challenges and decisions occurring at each stage, and the specificities of different types of dementias
- Delving into the impact of diagnosis on people living with dementia, their carers, relatives, and communities
- Addressing the symptoms and changes commonly associated with dementia, and the pharmacological and non-pharmacological interventions that can help people living with dementia and their carers
- Showcasing international and national perspectives on models of care
- Laying the groundwork for forward-thinking, principled approaches to dementia, necessary in order to move the needle forward
The surveys carried out for this report have notably found that:
- A surprising number of people living with dementia indicated they had not been offered post-diagnosis support beyond the initial information provided immediately after their diagnosis. In lower-income countries, 45% indicated they had not been offered support, while in higher-income countries, 37% indicated they were offered nothing. 62% of informal carers from lower-income countries said that the person in their care had not been given access to post-diagnosis support, whereas in higher-income countries 36% indicated they had not
- 64% of respondents living with dementia indicated they did not have a personalised care plan – a roadmap indicating how they would want to receive care throughout the progression of their condition
- Informal carers who responded to our survey indicated that stress was a very common factor while trying to cope with their caring responsibilities: 54% of them said they felt stress either often or all of the time, 39% said they felt stress some of the time, while only 8% of informal carers said they rarely or never felt stress
- Almost half (49%) of paid health and long-term care professionals said they felt stressed or under pressure some of the time, while 37% said they felt stressed often or all of the time. A quarter responded that they felt pressure impacts their ability to work often (20%) or all of the time (4%). When asked if they were given adequate time with their patients, 59% paid professional carers said they had not at all adequate (22%), or somewhat adequate (37%) time with each patient. Almost half (47%) of paid professionals said they did not feel they were adequately financially compensated for the work they provide
What the report makes clear is that a lot more needs to be done in order for post-diagnosis support to be more effective, equitable, and accessible globally
Among its recommendations, ADI calls for:
- National dementia plans to become a policy priority
- Care to be person-centred, culturally appropriate, and gender inclusive and underpinned by robust care plans
- Care to be coordinated and accessible, supported by a trained navigator or link workers
- Education to be improved and expanded
- Stigma to be further challenged
ADI hopes this substantial and comprehensive report will contribute to overcoming some of the apprehensions surrounding post-diagnosis dementia support and help identify some of the barriers to overcome – but also some opportunities that provide direction and hope.
Much more still needs to be done globally in terms of improving access to information, education, and resources to ensure equitable access to care, wherever people with dementia may live.
ADI intends for this year’s World Alzheimer Report to be a resource which gives people with dementia, their carers, health and long-term care professionals, and broader communities the tools to better navigate this journey in humane, empowering ways.