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Background
Parkinson's & Cognitive Changes
Parkinson's is a highly varied condition. The diagnosis is made based on certain changes in a persons' movements, with slowing of movements and sometimes stiffness, shaking and/or balance problems. A wide range of other symptoms may be experienced too, but every person is different and not everyone gets every symptom. Some people with Parkinson's experience difficulties with certain brain functions, including thinking, concentration and/or memory, known as 'cognitive' functions. In some cases, people develop dementia, known as Parkinson's Disease Dementia. This is when the problems with cognitive function are multiple and are interfering with daily life.
- We wanted to understand more about how people with these difficulties experience day-to-day life and how they could best be supported.
"Remote Consultations"
The Covid-19 pandemic led to a sudden change in the way healthcare and research studies could be delivered. Much became "remote" rather than "in-person". This involved telephone and video calls for consultations, alongside email and text messaging communications. The physical and cognitive symptoms in Parkinson's may affect how a person manages these technologies and how they experience remote consultations.
- We wanted to understand how remote consultations had been experienced and how they could be improved
What we did
11 participants with Parkinson's and cognitive difficulties, 10 family caregivers, and 27 healthcare professionals took part in the study. I conducted interviews with them by telephone or video call. In some cases both the person with Parkinson's and their family caregiver were interviewed together. We audio-recorded the interviews, then had them written out to analyse. We analyses the results, looking for patterns within what people said. This process involved researchers from a range of backgrounds as well as people with personal experiences of Parkinson's and cognitive impairment.
To get a broad understanding, we involved people from a range of backgrounds. This included a range of ages, living arrangements, severity of Parkinson's and severity of cognitive difficulties for those with Parkinson's. It included a range of different disciplines and areas of work for the healthcare professionals.
Interviews were conducted like a conversation, guided to cover the following:
- The impact of Parkinson's and cognitive changes on daily life.
- The information and support that people had received.
- The gaps in information and support available.
- How information and support could be improved.
- Experiences of "remote consultations", both telephone and video calls.
- How "remote consultations" could be improved.
What we found
Challenges of cognitive impairment in Parkinson's
For many, cognitive impairement is an added challenge to those already experienced in Parkinson's. It affected day-to-day activities, emotions, and communication. For many, this causes a social shift: close relationships become more intense, and wider social circles reduce. Living well was seen to be helped by people being motivated, using strategies to manage their condition themselves and by supportive relationships. There are widespread preconseptions about cognitive impairment which influence experiences. Many are fearful or in denial. Whilst there are similarities to other typres of dementia, recognition of differences is considered important.
Care and support for people with Parkinson's and cognitive impairment
Cognitive impairment in Parkinson's is complex: clinical management and healthcare interactions are more complicated. Techniques that helped included:
- Speaking slowly
- Using simple language
- Focusing on a single message
- Avoiding switching topics
People with Parkinson's and caregivers often felt they needed more or better information and emotional support. The way people get diagnosed with cognitive impairment in Parkinson's was inconsistent. Awareness of cognitive impairment in Parkinson's was poor. Not everyone who has it gets a diagnosis. Many felt that people with Parkinson's who have cognitive impairment fall through gaps in services. This could be improved with more collaborative and streamlined services. Many talked about the need for personalised care. People said this requires tailoring to individual needs and supporting self-management. People thought it could be helped by flexibility, time and continuity within services.
Remote consultations
Everyone had used telephone for both personal and healthcare. Many had used video calls for personal use and some had experiences video consultations for health. The "remote consultations" were typically due to Covid-19 pandemic rather than being the preferred choice. People described their experiences:
The nature of remote interactions:
- People felt it was "transactional", more functional and less personable.
- Many people felt that remote consultations were not "real", more of a chat, but not proper.
- People felt there was more risk associated with remote consultations.
Challenges exacerbated by being remote:
- Communication and understanding were more difficult due to speech and cognitive symptoms, especially on the telephone.
- Many people needed more help for remote consultations, sometimes ending up left out.
- Although people were happy to discuss any symptoms, including potentially sensitive topics (like toileting or sex), many thought delicate topics were more difficult remotely.
- Everyone thought that bad news or discussing the future was better done in-person and some people avoided these conversations in remote consultations.
Expectations vs reality:
- Many were suprised by how well remote consultations had gone and over time they got more used to them.
- Anticipated barriers were not always experienced.
- Of the expected advantages, some were experienced (like avoiding stress of travel to appointments) but some were not (healthcare professionals did not find them more efficient).
People felt that remote consultations could be improved with:
- Support for people with Parkinson's and caregivers. Practice and preparation could also help.
- Professional development, for example, being aware that checklists could be perceived as "transactional" and being mindful not to exclude the person with Parkinson's.
- Service improvement, for example, more flexible to individual needs.
Sharing the findings
The findings about remote consultations were presented at the BritMODIS conference (June 2022) and have been published; Remote consultations for people with Parkinson's Disease and cognitive impairment: Interview study with patients, caregivers, and health care professionals.
Findings about challenges of cognitive impairment in Prkinson's were presented at the Dementias 2023 conference (February 2023) and findings about healthcare and support have been presented at the British Geriatric Society Movement Disorders meeting (March 2023). These have been submitted to journals and are under review.