Protection against discrimination in national dementia guideline recommendations: A systematic review

Abstract

Background National dementia guidelines provide recommendations about the most effective approaches to diagnosis and interventions. Guidelines can improve care, but some groups such as people with minority characteristics may be disadvantaged if recommended approaches are the same for everyone. It is not known if dementia guidelines address specific needs related to patient characteristics. The objectives of this review are to identify which countries have national guidelines for dementia and synthesise recommendations relating to protected characteristics, as defined in the UK Equality Act 2010: age, disability, gender identity, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, and sexual orientation. Methods and findings We searched CINAHL, PsycINFO, and Medline databases and the Guideline International Network library from inception to March 4, 2020, for dementia guidelines in any language. We also searched, between April and September 2020, Google and the national health websites of all 196 countries in English and in each country’s official languages. 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. We rated quality according to the iCAHE guideline quality checklist. We provide a narrative synthesis of recommendations identified for each protected characteristic, prioritising those from higher-quality guidelines. Forty-six guidelines from 44 countries met our criteria, of which 18 were rated as higher quality. Most guidelines (39/46; 85%) made at least one reference to protected characteristics, and we identified recommendations relating to age, disability, race (or culture, ethnicity, or language), religion, sex, and sexual orientation. Age was the most frequently referenced characteristic (31/46; 67%) followed by race (or culture, ethnicity, or language; 25/46; 54%). Recommendations included specialist investigation and support for younger people affected by dementia and consideration of culture when assessing whether someone had dementia and providing person-centred care. Guidelines recommended considering religion when providing person-centred and end-of-life care. For disability, it was recommended that healthcare workers consider intellectual disability and sensory impairment when assessing for dementia. Most recommendations related to sex recommended not using sex hormones to treat cognitive impairment in men and women. One guideline made one recommendation related to sexual orientation. The main limitation of this study is that we only included national guidelines applicable to a whole country meaning guidelines from countries with differing healthcare systems within the country may have been excluded. Conclusions National guidelines for dementia vary in their consideration of protected characteristics. We found that around a fifth of the world’s countries have guidelines for dementia. We have identified areas of good practice that can be considered for future guidelines and suggest that all guidelines provide specific evidence-based recommendations for minority groups with examples of how to implement them. This will promote equity in the care of people affected by dementia and help to ensure that people with protected characteristics also have high-quality clinical services. Tiffeny James and team investigate which countries have national guidelines for dementia, and synthesise recommendations relating to protected characteristics as defined in the UK Equality Act 2010. Author summary Why was this study done? Clinical practice guidelines can improve the quality of dementia care, but some people with minority characteristics related, for example, to race or gender may be disadvantaged if the same approaches are used for everyone. It is not known whether national guidelines for dementia consider such characteristics in their recommendations. What did the researchers do and find? We did a systematic review searching in English and in the official languages of each country to identify which countries have national guidelines for dementia and assessed the extent to which they consider protected characteristics using the UK Equality Act 2010 to define protected characteristics. We identified 46 guidelines from 44 out of 196 countries in the world, most of which were high-income countries, and 37 of them included at least one recommendation related to protected characteristics including age, disability, race, religion, sex, and sexual orientation. Age and race were the most frequently referenced characteristics with recommendations including specialist investigation for younger people; consideration of culture and language when assessing dementia; and consideration of age, culture, and religion when providing person-centred care. What do these findings mean? We identified areas of good practice in higher-quality guidelines and recommend that all guidelines include specific evidence-based recommendations for minority groups, which are in line with the World Health Organisation’s human rights–based approach to dementia care. To our knowledge, this was the most comprehensive search for dementia guidelines to date; however, we only included national guidelines applicable to a whole country meaning that guidelines from countries with differing healthcare systems within the country have been excluded.