Two-fifths of people find it “too hard” to visit relatives with dementia

DEVASTATING new research released this week reveals the emotional impact of seeing loved ones with dementia suffer – with two-fifths avoiding relatives because it is too hard to see them lose independence. As winter approaches, the nationwide survey of family members and friends of people living with dementia, by the Longitude Prize on Dementia, also shows that half of the people would feel more reassured about their loved one’s safety with the right technology.

Over half of people with a close friend or family member with dementia reported feeling guilty when leaving their friend or relative on their own (51%) and three-fifths said they feel helpless when their relative is frustrated by their dementia (60%) – but many were concerned about damaging their relationship when they try to help (42%).

Sleepless nights plagued two-fifths of respondents who worry about their loved one being on their own (44%), but almost half (47%) said the technology could put their mind at rest with regard to their safety.

The statistics coincide with a new multi-million-pound prize to incentivize the creation of AI and machine-learning-based technologies that can help people living with early-stage dementia to stay independent and live fulfilling and enjoyable lives. The Longitude Prize on Dementia, delivered by Challenge Works and funded by Alzheimer’s Society and Innovate UK, is open to entries from innovators around the world until January 2023.

Commenting on the findings of the research, Daniel Berman, Director of Global Health and Disability at Challenge Works said: 

“These figures are disturbing, but sadly not surprising. We know that being diagnosed with dementia can leave individuals feeling isolated, and loved ones unsure how to support them. It’s time we create tech designed to help people living with dementia stay independent and continue to enjoy their lives. Facial recognition software already reminds us to tag someone on Facebook, imagine if it could be repurposed to help someone with dementia recognise a visitor. Imagine a smart kettle that switches on when that visitor arrives to give the impression they were expected. This smart technology exists, we now need to adapt it and deploy it to support people living with dementia.”

Around 900,000 people in the UK live with dementia, with someone diagnosed every three minutes. The condition could affect as many as 153 million around the world by 2050. Although there is currently no cure, people can live well for years. Hospital admissions have been proven to increase the rate of decline, but the hope is that assistive technology can help people stay safe and independent in their homes for longer. A survey by Alzheimer’s Society revealed 85% of people said they would want to stay at home for as long as possible if diagnosed with dementia.

Rory Cellan-Jones, former BBC Technology Correspondent and Longitude Prize on Dementia champion said:

“Seeing a loved one’s condition decline before your eyes is incredibly difficult and often scary. Maintaining close connections with family and friends is vital to the well-being of people living with the early stages of dementia, not least as we approach a difficult winter. New technologies that support a person living with dementia to retain their independence and keep them emotionally connected to their family and friends will be a lifeline – both to them, and their loved ones.”

To find out more and enter the Longitude Prize on Dementia, go to dementia.longitudeprize.org. Entries close on 26 January 2023.

As dementia progresses, some aspects of relationships with loved ones may become harder, but many positive elements of the relationship, like affection, will remain. Friends and relatives can help by encouraging the person with dementia to join social groups, community activities, religious activities or hobbies.

For information and support on caring for a loved one with dementia, Alzheimer’s Society offers friendly support through a range of virtual and in-person services, including their Dementia Connect support line (0333 150 3456), online forum Talking Point, and Dementia Advisers.  Visit alzheimers.org.uk.