It’s time we acknowledged the complexities of dying with dementia

With more and more people dying with dementia, nursing care homes desperately need support.

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Nursing homes are struggling to cope with increases in the number of people living with dementia – particularly where they’re approaching the end of life. That’s according to new research funded by Marie Curie, which provides evidence that could help improve the care received by thousands of people.

Data shows that 80% of the estimated 400,000 people in UK nursing homes are living with dementia or another cognitive disease. Up to now, few interventions have effectively helped care homes provide the care and support people living with dementia need.

The research by University College London (UCL) suggests a new model of integrated care (COMPASSION) could improve care for people living with dementia. It emphasises the need for better joint working and support to help nursing home staff manage the complex needs of residents.   

We need to see dementia as a terminal illness

Although there’s been a focus on treatments and ‘cures’, it’s important to remember that it is a terminal illness. Patients diagnosed with the disease will go on to die from it.

Last year the Marie Curie nursing service provided nearly 70,000 hours of care to people living with dementia, either as their sole terminal condition, or alongside others such as cancer or COPD.

We know that people are growing older with more and more complex conditions. And that means the pressure on hospitals will only intensify. In order to alleviate some of that pressure, and deliver the high-quality care we know is vital at the end of life, places of care like nursing homes need to be better supported.

Nursing homes and dying

Given the choice, most people say they prefer to die at home. For some people that will mean a nursing home – a place they live day-to-day, where they feel comfortable.

Nursing homes have been neglected in thinking about improving the places that support dying. But many people living with terminal illness take comfort from the familiarity nursing home surroundings offer. That’s incredibly important. 

If people can’t be cared for appropriately in a nursing home setting, we are likely to see an increase in unnecessary emergency admissions. That will mean long costly stays in hospital – often the worst environment for someone experiencing the confusion associated with dementia.

Barriers to delivering high-quality care

Nursing homes are already struggling with increased demand and staffing shortages. Recent CQC findings show that one in three nursing homes are providing inadequate care.

A lack of joined up care and the availability of external support from local health and social care staff is a huge factor. But the current system is a patchwork, with some areas delivering more support than others.

Until care homes are fully supported in providing high-quality end of life care, it will continue to be those with the most complex cases who miss out. People with dementia deserve to know that wherever they spend their final months, weeks and days, the level of care available to them will be of the highest standard.


A free manual, designed by UCL to help nursing care homes implement the new COMPASSION model of care, is available to download here.