IDEAL summary findings
The IDEAL research project is a major, five-year longitudinal cohort study of people with who have difficulties with memory, thinking or behaviour, that may have been described as dementia or an associated condition, and on the family members or friends who provide support throughout the UK.
Below are some summary findings from IDEAL so far.
Dementia affects a diverse group of people; everyone's experience of dementia is unique. In order to support people to 'live well' we need to think about the person beyond the illness, in a positive, individualised and holistic way.
For both the person with dementia and the carer, managing psychological health was shown to have the biggest impact on living well. Psychological health covers features like optimism, attitudes towards ageing, anxiety, depression and loneliness. We need to develop effective means of helping people to deal with low mood, anxiety and depression, and enable people to be resilient and retain a sense of optimism.
Being fit and healthy and able to manage everyday activities helps people affected by dementia to feel that they are living well. In the cohort, just over 80% were inactive and almost 40% had dropped activities or interests since their diagnosis, increasing to 60% for those living alone. The findings show that helping people to stay fit and independent and equipping them with problem-solving strategies to help manage day-to-day tasks improves quality of life.
Different types of dementia bring specific challenges. For example, people with Parkinson’s and Lewy body dementia rated their scores for living well lower than those with Alzheimer’s and fronto-temporal dementia. People with Parkinson’s disease dementia also incur higher health and social care costs. Professionals should be aware of the specific challenges associated with rarer forms of dementia and support should be provided to target specific needs.
By supporting carers we can improve both their quality of life and that of the person they are caring for. Carers who identified fewer positive aspects of caring also rated their well-being less positively. It may be helpful to focus on enabling carers to cultivate positive emotions, rather than trying to decrease the sense of burden which is more difficult to change.
There were differences in the way carers understood the changes in the person with dementia. Just under half of carers used a diagnostic term, such as dementia, to refer to the person’s condition. Carers who felt there was little the person with dementia could do to control the effects of the condition had lower well-being and satisfaction with life, and higher caregiving stress. This suggests that providing carers with information about ways a person with dementia can manage the effects of the condition will positively impact on the well-being of the carer.
For many people, dementia is not the only health condition they’re dealing with. Half of those in the cohort had one or two other health conditions, and nearly a fifth had three or four. Feelings of living well declined as the number of health conditions increased. Rather than dealing with each health condition separately, people with dementia need access to integrated and co-ordinated health care.
Having access to a single named health or social care professional who is responsible for coordinating care benefits people with dementia and is now recommended in the NICE guideline on dementia. However 66% of the cohort do not have access to a single named professional.
Better resources and infrastructure are needed to support people in disadvantaged communities to live well with dementia. The chances of ‘living well’ were related to where people live. People living with dementia in more deprived areas were less likely to feel they were ‘living well than those living in less deprived areas. Inequalities exist around the country, not just in health care provision but also in the ability to ‘live well’ with dementia.
The IDEAL researchers are committed to ensuring the views of 'seldom heard' groups are represented within the IDEAL cohort. They are speaking to those from black, Asian and minority ethnic communities, and exploring how we can better include the views of those with more advanced dementia.
These findings have been collated from the following publications:
Clare, L., Wu, Y.-T., Jones, I.R., Victor, C.R., Nelis, S.M., Martyr, A., Quinn, C., Litherland, R., Pickett, J.A., Hindle, J.V., Jones, R.W., Knapp, M., Kopelman, M.D., Morris, R.G., Rusted, J.M., Thom, J.M., Lamont, R.A., Henderson, C., Rippon, I., Hillman, A., Matthews, F.E., & On behalf of the IDEAL study team. (2018). A comprehensive model of factors associated with subjective perceptions of "living well" with dementia: findings from the IDEAL study. Alzheimer Disease and Associated Disorders, 33(1), 36-41. doi: 10.1097/WAD.0000000000000286 (open access) click here to read a lay summary
Clare, L., Wu, Y.-T., Quinn, C., Jones, I.R., Victor, C.R., Nelis, S.M., Martyr, A., Litherland, R., Pickett, J.A., Hindle, J.V., Jones, R.W., Knapp, M., Kopelman, M.D., Morris, R.G., Rusted, J.M., Thom, J.M., Lamont, R.A., Henderson, C., Rippon, I., Hillman, A., Matthews, F.E., & On behalf of the IDEAL study team. (2018). A comprehensive model of factors associated with capability to "live well" for family caregivers of people living with mild-to-moderate dementia: findings from the IDEAL study. Alzheimer Disease and Associated Disorders, 33(1), 29-35. doi: 10.1097/WAD.0000000000000285 (open access) click here to read a lay summary
Wu, Y.-T., Clare, L., Hindle, J.V., Nelis, S.M., Martyr, A., Matthews, F.E., & on behalf of the IDEAL study team. (2018). Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study. BMC Medicine, 16(1), 140. doi: 10.1186/s12916-018-1135-2 (open access) click here to read a lay summary
Quinn, C., Nelis, S.M., Martyr, A., Victor, C., Morris, R.G., & Clare, L., on behalf of the IDEAL study team. (2019). Influence of positive and negative dimensions of dementia caregiving on caregiver well-being and satisfaction with life: Findings from the IDEAL study. American Journal of Geriatric Psychiatry, 27(8), 838-848. doi:10.1016/j.jagp.2019.02.005 (open access) click here to read a lay summary
Quinn, C., Nelis, S.M., Martyr, A., Morris, R.G., Victor, C., & Clare, L. on behalf of the IDEAL study team. (2020). Caregiver influences on 'living well' for people with dementia: Findings from the IDEAL study. Aging & Mental Health, 24(9), 1505-1513. doi: 10.1080/13607863.2019.1602590 (open access) click here to read an accessible summary read the blog on this article here
Nelis, S.M., Wu, Y.-T., Matthews, F.E., Martyr, A., Quinn, C., Rippon, I., Rusted, J., Thom, J.M., Kopelman, M.D., Hindle, J.V., Jones, R.W., & Clare, L. (2019). The impact of comorbidity on the quality of life of people with dementia: findings from the IDEAL study. Age and Ageing, 48(3), 361-367. doi: 10.1093/ageing/afy155 (open access) click here to read a lay summary Read the blog on this article here