National dementia guidelines fail to recognise minority groups

Dementia guidelines provide recommendations about the most effective approaches to diagnosis and interventions. The researchers wanted to find out which countries have guidelines, and if they consider protected characteristics such as age, disability, gender identity, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, and sexual orientation (as defined in the UK Equality Act 2010).

They investigated 196 countries and found that only 44 have guidelines specifically for dementia*. Of the guidelines found, a recurring theme was a lack of information relating to the prior-listed protected characteristics.

While 37 of the guidelines included at least one mention of a protected characteristic, the recommendations were often vague and failed to provide examples.

Guidelines are designed to improve care, but some groups may be disadvantaged if recommended approaches are the same for everyone. For example, people from minority ethnic groups tend to present later in their illness to dementia services than the majority populations meaning diagnosis and treatment is delayed. Similarly, for people aged under 65, dementia diagnosis takes on average 4.4 years compared to 2.8 years for those over 65 suggesting that guidelines need to address specific needs related to patient characteristics.

The researchers also found that the majority of countries with official guidelines are high-income countries, despite the fact that according to the World Health Organization over 60% of global dementia patients are from low-and-middle income countries.

Lead author Tiffeny James said “All guidelines should include evidence-based recommendations about protected characteristics using the best examples from individual health systems and include examples to promote equity. Future research is needed in which minority groups explain their experiences, and the needs of people affected by dementia with different protected characteristics are identified.”

Senior author Professor Gill Livingston said “We were surprised that only one national dementia guideline in the world considers LGBTQ+ people despite many patients and researchers being part of these communities. We should prioritise working with this group to provide evidence-based guidelines.”

Paola Barbarino, CEO of Alzheimer's Disease International, added “The intellectual quest behind this paper is of the utmost importance for all those living with dementia today. In a world where person-centered care is critical but rarely implemented, it is so important to understand where are we in the understanding of the importance of each individual’s circumstances and needs in the diagnosis and care of people who live with Alzheimers’. I am heartened to read how some countries equitable dementia guidance e.g. Australia, are inspiring other countries, e.g. Colombia. Helping each other understand and adopt good practice, solidarity and support is at the heart of what ADI does and I welcome this study.”

* To be included, guidelines had to provide recommendations about dementia, which were expected to be followed by healthcare workers and be approved at a national policy level.

Related

• Research paper in PLOS Medicine
• Tiffeny James academic profile
• Professor Gill Livingston academic profile
• UCL Psychiatry
• Alzheimer's Disease International