The IDEAL programme cohort study consists of 6 waves of interviews referred to as time points 1-6 or T1-T6. The IDEAL cohort was initially assessed at T1 (baseline), T2 (12 months follow up) and T3 (24 months follow up).
IDEAL-2 is an extension to the original programme and covers T4 (48 months follow up), T5 (60 month follow up) and T6 (72 month follow up).
As well as following up participants from T1-T3, the second wave (IDEAL-2) also introduced a new set of participants with rare types of dementia and/or below age of 65 or 90 years old and above. The new participants are known as the ‘enrichment cohort’ as they allow for a more diverse group and more meaningful analyses of sub-groups. In practice this means that the findings from the programme should be relatable for more people living with dementia.
Dementia is an 'umbrella' term which covers different conditions or 'diseases of the brain'
- There is so much more to a person than a diagnosis of dementia.
- Dementia is not a natural part of ageing: age is a risk factor but not a cause.
- Dementia and Alzheimer’s disease are often confused, this is because Alzheimer’s disease is the most common type so the two get used interchangeably.
- Dementia is not just about memory, it can lead to difficulties with language, changes in ability to do everyday activities, confusion around time and location, as well as changes in mood or behaviour.
People with dementia were invited to take part in the IDEAL programme, with or without a family member/ friend taking part with them.
In order to apply findings from the programme to the wider population of people with dementia, the people involved in the study need to be similar to the general population.
Researchers often refer to this as being 'generalisable'. At the end of time point 3, the numbers of people with rarer types of dementia below 65 or 90 years old or older were relatively low.
- The IDEAL programme included people with dementia (1537) and their family members/friends (1277).
- One year later at T2, 1183 people with dementia and their family members/friends (988) continued in the study.
- One year later at T3, 851 people with dementia and their family members/friends (759) continued in the study.
- Two years after T3 visits, 253 people with dementia and their family members/friends (242) continued in the study at T4. T4 and T5 recruitment and assessment periods were interrupted by the COVID-19 pandemic.
- At T6, 96 people with dementia and their family members/friends (173) completed the study.
- An additional 204 people with rarer types of dementia and/or younger than 65 or over 90 years old will also be invited to participate along with 175 family members/friends. The plan was for 250, but this recruitment was interrupted by the COVID-19 pandemic.
Some people who have taken part have provided some nice feedback on the project :
- "Very enjoyable - provided me with a greater insight into the future and what it may hold."
- "The project is thought-provoking and enjoyable. Hope this will help others. Very interesting, made daughter and mother talk about things they had not done before - 'opened our eyes."
- "Found the experience very interesting. Good research project that may help people in the future."
- "I am happy to be taking part. It has heightened my awareness of our circumstances. I hope there will be positive outcomes from this research for future provision."
- "Happy to contribute and help other people"
- The IDEAL programme covers 6 Time points (T1-T6)
- The programme explores what it means for people to 'live well'.
- The majority of the participants began at T1.
- The enrichment group joined at T4 to increase under-represented groups in IDEAL cohort e.g. people with rarer types of dementia, and people below 65 years old or 90 or over years old.
- People with dementia could take part on their own or with a family member/friend.
- If a person with dementia is supported by a paid carer, they can be invited to take part too.
- The IDEAL programme included 30 NHS sites across Great Britain.