Jane Nickels, MacIntyre's Learning Disabilities Admiral Nurse, shares her latest blog post detailing plans for a Dementia Family Network within MacIntyre, how we are continuing to improve the assessment and early diagnosis of people with dementia and how to gather information for sharing with health professionals to help to receive an earlier diagnosis.
January can be a difficult month for some people and I think particularly more so at present due to tightened COVID-19 restrictions. There does appear to be light at the end of the tunnel though with the steady rollout of various vaccines.
MacIntyre have an amazing timetable of events to try and keep people active, connected and supported which they plan to run throughout the year. I think we’re all getting better at online events and activities (some more than others).
The first national virtual MacIntyre Memory Café was held in January which appeared to be a great success and those who attended have chosen their theme for the next café in February, which will be 'Harry Potter'. To say I'm delighted is an understatement, I love Harry Potter!
There are plans to start a Dementia Family Network within MacIntyre in February, as well as a series of webinars which will address various issues experienced by people whose lives who are affected by dementia.
Improving the assessment and early diagnosis of people with dementia
Work continues to improve the assessment and early diagnosis of people with dementia. This is still a struggle with many professionals not fully acknowledging signs and symptoms being linked ¬¬with dementia and sadly often seeing the learning disability first. This is something that needs to change and quickly. NICE (2016) have provided guidance for professionals to follow during the diagnosis process but unfortunately, this appears not to be followed in many cases.
How to gather information to share with health professionals
This month I thought it might be helpful to focus on diagnosis and how to gather information for sharing with health professionals. Often it is small changes in a person's presentation that alert family members, those directly supporting the person or those sharing a home with them, but what should we do with all this information?
The easy answer is to capture it! Whether it be daily notes, bespoke recording documents based on changes in the person’s presentation and most importantly completion of the Anticipatory Care Calendar (known internally as the Health Calendar in MacIntyre).
Below you can find various links to resources that look at different ways to support diagnosis which I hope you will find useful.
- Getting a timely diagnosis of dementia | MacIntyre (macintyrecharity.org)
- Dementia early signs and diagnosis - Dementia - SCIE
- Getting a diagnosis of dementia - Dementia UK
- Recommendations | Mental health problems in people with learning disabilities: prevention, assessment and management | Guidance | NICE
- Anticipatory Care Calendar | Innovation Agency NWC