The COVID-19 crisis has highlighted the ongoing global lack of preparedness for health systems around the world. In the case of some diseases like dementia, one of the biggest health and social care crises of this and future generations; awareness, support and education are key to successfully prepare patients, family members and caregivers. In this article, we ask Paola Barbarino, CEO of Alzheimer’s Disease International, to answer some of the most common questions about this disease.
What is the impact of dementia on families, and family caretakers?
The impact of dementia can be overwhelming for families – and particularly for the individual who receives the diagnosis. It often requires a complete re-think about future plans. Depending upon the age of the individual who is diagnosed or the stage or type of dementia with which he/she is diagnosed, families will need to support their loved one through a gradual process of losing capacity or abilities and ensuring they put support in place to enable their loved one to stay as independent as possible, for as long as possible. Getting the right support to do this is vital.
Access to health services or memory services that provide dementia medication (if appropriate, depending on diagnosis) and follow-on support is essential. Equally, access to long-term care that provides support at home for the individual and his/her family car is key. We know that the impact of a diagnosis varies greatly according to the kind of service and support provision is available in each country, but in some, it can be devastating.
Our World Alzheimer’s report 2019 asked this question and we got replies from 70,000 people in over 130 countries. This is the best source of direct information on this matter. For example, 35% of carers globally said they have hidden the diagnosis of dementia of a family member, over 50% of carers globally said that their health had suffered as a result of their caring responsibilities.
What are good models of support for families of people with dementia? Tell us a little bit about best practices.
Less has been written on good models of support for families than on care, a good source is the 2012 report by the World Health Organization (WHO) and Alzheimer Disease International on Dementia. It is very important that families are supported from the moment a diagnosis is received. We call this, post-diagnostic support both for people living with dementia and for their families. Sadly, very few countries do this systematically, the best practices at the national level come from Scotland.
How important is the integration between healthcare and social care services in the treatment of dementia?
It is extremely important that the two are intimately linked and integrated in order to provide well-rounded support to families affected by dementia. People living with dementia often have complex healthcare needs and comorbidities and are less able to articulate their needs. It is essential that people with dementia receive holistic support that is coordinated across sectors. Unfortunately, often health and long-term care (or social care) are not coordinated and this creates a confusing care pathway for families who are trying to seek post-diagnostic support, sometimes with mixed or conflicting messages. This lack of integration can be distressing for families and also costly – both in terms of well-being for the person with dementia, but also for governments. National Dementia Plans provide a framework that encourages integrated support and calls on governments to invest in dementia responses that are coordinated and person-centered.
Do you think that COVID-19 will have a greater impact on people with dementia than on those with other diseases?
Yes, this is a fact. According to the data in our possession, so far in Canada, 66% of people who died due to COVID-19 had dementia, 26% in the UK and 22% in Italy. We have asked the WHO to ask more countries to collect data, but results are very slow. Also, as far as we know, COVID-19 is more lethal after 65 years of age and dementia is more prevalent after 65 years of age.
What is the implication of Dementia not being a Mental Health Issue? Why is this distinction important?
Dementia is an umbrella term for a collection of symptoms that are caused by disorders affecting the brain. There are over 100 types of dementia. At a basic level, if you look at scans of a healthy brain and a brain with dementia, they are very different. The scan of someone with a severe mental health issue and one without can be identical. The distinction is important because the diagnosis and treatment of dementia from that of a mental health issue is very different. Sometimes, physicians diagnose dementia incorrectly and, therefore, the person does not get the best access to treatment and care.
Which are the factors that contribute to the development of dementia?
There are a number of well-known risk factors, as seen in the image below. Many factors overlap with other noncommunicable diseases and others are unique to dementia.
How can a system of long-term care help?
Globally, 13% of people aged 60 or over require long-term care. Between 2010 and 2050, the total number of older people with care needs will nearly treble from 101 to 277 million. In terms of long-term care, this is mainly care for people with dementia; around half of all older people who need personal care have dementia, and 80% of older people in nursing homes are living with dementia. We estimate that the worldwide cost of dementia care is currently about $1 trillion US dollars. Dementia is a progressive condition and the care needs of the person living with the condition will augment over time. Preparing for long-term care can help the person living with dementia to live their normal life for longer in their own home – and if that is no longer possible, long-term care facilities can provide important care and help alleviate the worst elements of dementia using different models of care.
Should dementia support/care services be provided through the health system, or countries should create a separate support system outside the healthcare sector? What does the international evidence show?
In our experience, by and large dementia support/care services are usually provided or scoped within the health system. This makes sense especially for people with multiple conditions (often the case with dementia as the majority of cases is developed after 65 years of age). That said, several countries involve other governmental areas too, for example welfare or social services or labour (this last in particular in relation to supporting working people with caring responsibilities). Coordination and clarity about where responsibilities (and budgets) lie is critical in these cases and this is also why a well written national dementia plan is so important to achieve coordination. South Korea is a great example of clarity and they are on their 4th dementia plan; interestingly however, they have created a governmental department (the Korean National Institute of Dementia) which deals exclusively with the matter, with a ringfenced budget and activities. Underpinning all this is an extraordinary database which gathers all intelligence and services about dementia in one place and is probably the real reason of the success of the country in this area.
If mental and emotional health is supported, does that prevent the onset of dementia?
No, there is no evidence of that. But there is evidence that for people who do develop dementia, emotional and health support is essential for a slower progression and maximum wellbeing. In general, it improves quality of life with the disease.