20,000 reasons to take action on dementia in Northern Ireland
Isolated. Alone. Denied the health and social care they need. This is still the experience of too many people with dementia and those who care for them right across Northern Ireland. Here are five priorities the Government need to action.
5 priorities for action in Northern Ireland
1. Improve diagnosis rates
Increase the dementia diagnosis rate to 75% across all Health and Social Care Trusts.
Getting a diagnosis opens doors to information, care and support that helps keep a person with dementia as well and independent as they can be.
A thorough and timely assessment for possible dementia is essential, in order to:
- Rule out other conditions that may have similar symptoms and may be treatable, including depression, chest and urinary tract infections, severe constipation, and vitamin and thyroid deficiencies
- Rule out other possible causes of confusion (eg poor sight or hearing), emotional changes and upsets (eg moving house or bereavement), or the side effects of certain drugs or combinations of drugs
- Provide a person with dementia with an explanation for their symptoms, removing uncertainty and allowing them to begin to adjust
- Allow a person with dementia to access treatment as well as information, advice and support (emotional, practical, legal and financial)
- Allow a person with dementia to plan and make arrangements for the future.
Read Liz's story
Liz Cunningham was diagnosed with early-onset Alzheimer’s when she was just 48-years-old. Here she shares her experiences of been diagnosed in Northern Ireland.
2. Improve post-diagnosis support
Dementia Support Worker
We need to give people access to a Support Worker from point of diagnosis.
All forms of dementia are complex and have differing but profound effects on the person and their family carers. Having support from a person with expertise in dementia and who knows what services the person may need as their condition progresses, improves quality of life and can maintain welfare for longer.
Dementia Support Worker Valerie Guthrie helps people cope with the impact of a new diagnosis and supports them as they plan for the future.
‘Sometimes the family is in shock and just take the written information home to read,’ she says.
‘But most people are quite eager to talk and are even relieved to have the chance. In some cases they’ve been living with the effects of dementia for some time. Getting a diagnosis makes sense of a lot of changes in the person, which they’ve been trying to cope with on their own.’
Valerie is able to connect carers to activities in their area where they get to meet with people living with similar challenges. This means they have access to information and support and don’t feel so isolated. She explains that many people don’t even know Dementia Support Workers exist.
‘One carer told me that the consultant who diagnosed her mother had been quite dismissive, didn’t explain things clearly to them and made no reference to Alzheimer’s Society as a potential source of support.’
‘The carer felt she should have been referred to a Dementia Support Worker at the time when her mother had been diagnosed rather than leaving it to chance and causing months of anxiety and avoidable stress.’
3. Ensure a high standard of home care
Health and Social Care Trusts should be compelled to commission quality home care for people with dementia.
Dementia-skilled care for people living independently at home is an investment in wellbeing. Most people want to stay at home as long as they can: quality, community-based care keeps people out or hospital and long term residential care.
Alzheimer's Society's 2011 report, Support. Stay. Save, found that one in ten of all respondents to questionnaires said the person with dementia in their family was admitted to long-term care sooner than expected, as a result of not getting sufficient support to meet their needs at home.
4. Increase public awareness and understanding
The Department of Health needs to run a recurring public information campaign to raise awareness of dementia.
Everyone needs to know about dementia, to understand how it affects the person as well as how a few, simple lifestyle changes can help reduce risk of developing it.
Dementia is amongst the most feared illnesses, especially in those over 50 and this may in itself be a barrier to getting information, to seeking help and certainly to talking openly about the condition.
5. Make Northern Ireland dementia-friendly
Promote dementia-friendly communities throughout Northern Ireland and create a dementia-friendly assembly in the first year of the new term.
Public understanding of dementia and how it affects a person can build confidence in our ability to communicate with and relate to people with dementia. Even small changes in attitudes and behaviour can make a big difference to neighbourhoods, towns and villages for a person with dementia.
The next Assembly should lead the way in making sure that people living with dementia in Northern Ireland are not left isolated. By becoming dementia-friendly, communities around Northern Ireland can make daily living and activities easier and more accessible to people living with dementia. What better way to promote a life-changing initiative than by embedding it at Stormont?
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Be part of a wider movement that is pushing for positive change to the lives of people affected by dementia.