Opinion

What should good dementia care look like?

Paul Edwards, Director of Clinical Services  

Even before the outbreak of coronavirus, many families with dementia felt that they had nowhere or no one to turn to. These issues have now been compounded by the virus, with reduced dementia support services, and some people with dementia experiencing significant cognitive and physical decline. It’s clear that there is a lot more we can do to improve dementia care and support; that’s why listening and learning from the experiences of people affected by dementia, healthcare professionals and dementia specialists supporting them is essential.

77% of families we surveyed in 2019 told us that access to the information and support they need following a diagnosis of dementia is in short supply. The pandemic has now greatly increased delays in families receiving a diagnosis due to services being stretched too thin and lack of face-to-face consultations. This affects the quality and quantity of information which families with dementia have access to and signposting to specialist dementia support

Not being able to get this kind of support and information, in terms of signposting to support services and applications such as Lasting Power of Attorney and Continuing Healthcare, can have a significant impact on families and the person with dementia; this can range from deterioration in mental and physical health to financial hardship for the whole family. The ongoing effects of coronavirus have thrown this all into sharp relief: 83% of carers we surveyed in 2020 have had fewer opportunities to take a break from their caring role, 86% reported a decline in their own mental wellbeing and a further 62% are worried about whether they can continue to care for the person with dementia at home during the pandemic.

Families are not the only ones facing pressure. GPs in particular are often families’ first point of contact if they are worried about a relative or someone close who may have dementia. They are however significantly time-strapped which limits their ability to give the support which people with dementia need; we have seen this across all four nations within the UK. In fact 82% of health care professionals surveyed said they have limited time and capacity for appointments. It’s seemingly in a climate of ever tightening health budgets and demand from other long-term health conditions that families with dementia are once again missing out.

In addition, how health and social care professionals can support families with dementia in this climate was a focal point of this research project. Best practice, as enshrined in the NICE Quality Standard on Dementia and NICE guidance, to name but a few, can fall to the wayside with all these pressures. 58% of Dementia UK’s Admiral Nurses agreed that there is a lack of information and support for families with dementia. The need for best practice across care settings is what Dementia UK’s dementia specialist Admiral Nurses are firm proponents of, with many already supporting those working in primary care services to understand the complexities of dementia and why families should have access to tailored support.

Only together can we deliver the dementia support that all families deserve and need. Our Only together recommendations outline how improvements in dementia care can be achieved by working in partnership.

Tailored information as our first recommendation is about more than short-term effects on health and wellbeing for family members; it is also about giving family members the knowledge and understanding of the different stages of dementia and how this can allow them to plan for the future. The way families currently receive this information can either be too overwhelming, or there is just not enough information to support them through their real and escalating challenges. For families, it is about quantity, detail and timing of the information offered in response to their individual needs. If professionals have an understanding of this, then information is more likely to be phased in. For example, some families may appreciate a short information resource as a starting point so as not to overwhelm them.

Secondly, families need a single point of contact.  People can feel lost in a system which is anything but joined up. It’s the people affected by dementia who are largely trapped in a limbo state, from not knowing which part of the healthcare system can support them to a social care system which can cripple them financially. A single point of contact is an advocate for better care and support, allowing families to know exactly who or where to turn to in times of need.

The road to better dementia care will be challenging. However we can all play a part in improving a system which benefits the lives of people affected by dementia, by giving them the right information at every stage of the condition. Complementing this will be the single point of contact who can help the person and the wider family make sense of that information, pointing them to appropriate support and advocating for them wherever possible. As an example of how this might work in practice, our dementia specialist Admiral Nurses can guide families to appropriate and timely information and support services, in addition to ensuring the GPs and other healthcare professionals have all the requisite information about dementia at their fingertips.

For further information on Dementia UK’s first-ever influencing campaign, please see the link here for their Facing it Alone report and the corresponding Only together paper here which outlines recommendations for better dementia support. If you would like to get involved in Dementia UK’s campaigns for improved dementia care, please visit their Campaigns Network page here

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