New thesis about experiences of persons living with neurocognitive disorders
Marie Tyrrell, PhD-student at the Division of Neurogeriatrics. On March 6, 2020 you will defend your thesis:
”VOICES TO REMEMBER: Persons’ and family members’ experiences of living with neurocognitive disorders and related symptoms”,
What's the main focus of the thesis?
Neurocognitive disorders, ranging from mild cognitive impairment to dementia, occur across the age span, however, are most common in persons over 65 years. This thesis includes two perspectives: The persons´ experiences of living with cognitive impairment and completing a cognitive assessment, and family members’ experiences of living with a person who has behaviour and psychological symptoms related to dementia.
Which are the most important results?
The results of our studies highlight how few persons were self-referred for a cognitive assessment, they were often encouraged by others to do so. Upon completion of the assessment, not all persons who received a neurocognitive diagnosis were eligible for follow-up care and support. Most persons received a diagnosis of mild cognitive impairment, which was experienced as an abstract and an ambiguous diagnosis. Of the persons who received an Alzheimer’s diagnosis, some felt unprepared for the news and implications it would have on their lives. Completion of the NPI (Cummings et al., 1994) questionnaire (included in all studies) facilitated persons to report the presence of behavioural and psychological symptoms, which were often not previously reported. Some persons, who reported behavioural symptoms, viewed these symptoms as normal responses to a life with cognitive impairment. Family members reported that the person with dementia had on average five to eight co-existing symptoms on the NPI. In some cases, the presence of behavioural and psychological symptoms jeopardised the lives of the persons with dementia and their family members both in real life and on social media.
How can this new knowledge contribute to the improvement of people’s health?
This doctoral thesis underlines the need for a person-centred approach in the planning of care and support for persons and family members living with neurocognitive disorders and related symptoms. A pre-assessment counselling can help the person prepare for the cognitive assessment process and likelihood of receiving a neurocognitive diagnosis. Incorporating a symptom assessment tool such as the NPI (Cummings et al., 1994), as part of the cognitive assessment can help identify the presence of symptoms which can remain un-detected during the assessment process. Follow-up care and support should be offered to all persons who receive a neurocognitive diagnosis.
What´s in the future for you? Will you keep on conducting research?
Yes, I will and it would be great if I could through my research assist in improving care and support offered to persons with neurocognitive disorders.