Dementia awareness raising

OT ’s Emily McCormick finds out more about Dementia Awareness Week, which is hosted by the Alzheimer’s Society later this month (17–23 May)

Dementia awareness raising

According to the Alzheimer’s Society, it is estimated that by the end of this year, over 850,000 people will be diagnosed with dementia in the UK, with this number set to reach one million by 2025. 

In a drive to raise awareness and understanding of the condition among the public and health professionals, the charity will host Dementia Awareness Week in May.

This year the campaign will focus on encouraging people to ‘do something new.’ Explaining the theme, the charity believes that “life doesn’t have to end when dementia begins.” A spokesperson told OT: “New experiences can still bring joy to a person’s life, even as memories fade.” 

2014 highlights

As a flagship initiative for the charity, the awareness week is hosted annually across England, Wales and Northern Ireland. 

Last year, more than 550 awareness-raising events were held during the week, which encouraged the public to “open up and share their concerns about dementia,” after a poll by the charity reported that 40% of people affected by the condition have bottled up their worries. Events ranged from information stands and tea dances, to a singing flashmob in Coventry’s city centre. 

With the campaign headed up by Star Trek actress Alice Eve as celebrity supporter, it secured extensive consumer press coverage in national newspapers and magazines including The Daily Telegraph, Daily Mail, Hello! and Woman. 

Practitioners advice

Speaking to OT about why it is important for healthcare professionals, including optometrists, to be aware of dementia, senior programme manager for the dementia awareness training project at UCL Partners, Sian Jones, explained: “Having the right knowledge, skills and time are essential components to providing good care. 

“We all need to understand more about dementia as well as the role we can play in our personal and professional lives to ensure that people living with dementia are consistently treated with respect, dignity and compassion.”   
Several reports have discussed the need for healthcare staff to improve their understanding and knowledge of dementia so that they can deliver patient centred care that will have a positive influence for those living with dementia, This includes the All Parliamentary Group on Dementia, which calls for greater awareness so that:

  • We know of the need to give frequent reminders – eg of who we are and what we’re doing
  • We can understand the person's possible perspective and feelings
  • We know when we might need to look beneath the surface rather than taking the person’s words at face value
  • We understand that the person might express their needs in different ways (eg if in pain)
Tim Shakespeare, a research fellow for Alzheimer’s Research UK at the Dementia Research Centre, University College London, said: “As the population ages more and more people are being diagnosed with dementia. This can mean that people are less able to communicate or travel to access care, so treatable eye conditions may be missed. 

He continued: “Cortical visual loss is very common in Alzheimer’s disease and may even be the earliest symptom in individuals with posterior cortical atrophy. Such dementia-related visual dysfunction has a significant impact on everyday function and quality of life, and may trigger or exacerbate challenging behaviours. Symptoms of cortical visual loss in dementia may seem unusual, but a greater understanding of these symptoms is important to help people live better with dementia.” 

Offering optometrists and opticians some tips for helping to improve the experience of an eye test for a patient with dementia, Ms Jones and Mr Shakespeare listed:

  • Know a little about the person – a connection will help you communicate 
  • Use the right title – showing respect
  • Maintain a calm, tranquil environment 
  • Offer the person some choice – giving a sense of autonomy 
  • Provide clear explanations
  • Adapt your approach to suit the client
  • Be aware that cortical visual and cognitive problems may necessitate adaptation of standard assessments (eg using simple shape rather than letter-based acuity measures; offering alternative responses to mitigate word retrieval problems [eg “Is it a square, circle or triangle?”])
  • Warn if you are moving close to the person
  • Provide breaks from sitting still
  • Give yourself extra time to conduct an examination
  • Occupy the hands of the person whilst treatment is taking place
  • Carers /family should be present
  • Good advice for managing at home.
  • Be aware that visual impairment in people with dementia may trigger or exacerbate challenging behaviours

The optical profession

Understanding the importance of the role that practitioners can play in raising awareness of the condition within their communities, the Local Optical Committees Support Unit (LOCSU) will work with the Alzheimer’s Society in the near future to promote its Dementia Friends programme via local optical committees (LOCs). 

Established in February 2013, the Dementia Friends programme is the biggest ever initiative with the remit of changing people’s perceptions of dementia. 
The programme calls on volunteers, who have undertaken a training session about the condition and what it is like to live with dementia, to raise awareness of the condition within their local community. 

Managing director of LOCSU, Katrina Venerus, told OT: “In view of the ageing population, optical practices can expect to see increasing numbers of people with dementia accessing sight tests and low vision assessments, therefore it is important that the whole practice team understands the difficulties that people with dementia can have and some of the simple steps they can take to support people. 
“LOCSU is delighted to support the Alzheimer Society’s Dementia Friends programme, which aims to transform the way the nation thinks, talks and acts about the condition. We look forward to working with the Alzheimer’s Society to promote the uptake of Dementia Friends training across the optical sector.”

The Unit also revealed that in the East Midlands, LOCs are being encouraged to publicise free dementia awareness training among practitioners. 
Suitable for primary care staff working within the region, Health Education East Midlands has commissioned Derbyshire Health United to provide basic dementia awareness training. 

A number of optometrists and opticians have already taken part in the training in the region and said that they found it useful.

Demonstrating how practices can get involved, independent opticians group, Valli Opticians, will use the week to highlight the importance of eye care for people with dementia across its seven practices.

Moin Valli, managing director of the Valli Opticians group, emphasised that it is important that a person’s eye sight is not overlooked when they have health conditions such as dementia.

He commented: “Dementia is a cruel and heart-breaking condition, not only for those suffering from it, but for their loved ones too. Because of their dementia, patients may not be able to tell anyone they have a problem with their eyes. 

“It is vital that patients have access to eye care services, whether they are able to visit a community practice or are confined to their own home or care home. Improving a patient’s vision and eye health can make a dramatic difference to their quality of life.”

Backing the awareness week, the National Skills Agency for Health will run a series of podcasts with a panel of experts to discuss dementia care issues. 

Hosted daily via Twitter throughout the week, experts from the University College London Partners, as well as the NHS, will take part in the podcasts to debate issues which surround the condition and answer questions. 

For more information, visit the Alzheimer's Society website