I attended a wonderful webinar from Canadian Institutes of Health Research on dealing with dementia. It offered perspectives from two caregivers (one Alzheimer’s and one Parkinson’s + dementia), a nurse and a physician on “living” with dementia. Here are some of the highlights I took away…
For caregivers and persons with dementia:
- dementia is complex!
- the diseases behind dementia express themselves later in life – it has to do some cumulative damage in the brain over the years before it appears … this is why AGE is the main risk factor for dementia
- Alzheimer’s disease is the largest component of dementia, but only a component – Parkinson’s disease can also be a source of dementia.
- In Parkinson’s disease, cognitive issues include more personality, emotions, interaction with others and mood (anxiety, depression) rather than memory issues. And this affects family members.
- Family caregivers stress the difficulty in managing age-related issues, dementia, Parkinson’s disease, and medication management… Parkinson’s dosage can be up to every 2hours and include more than 45 pills per day!
- The obsessive behaviours are more stressful than the toileting and dressing difficulties.
- caregiving in someone with Parkinson’s + dementia is a “double whammy”: physical exhaustion (dressing, toiling) and mental exhaustion (from worry about dementia)… physical part easier than mental to caregiver!
- Although there is a great deal of sadness, caregivers reflect on the many years of happiness – and cope by taking things one day at a time, one solution at a time.
For healthcare practitioners diagnosing someone with dementia:
- healthcare professionals need to consider: what the person knows about they diagnosis? what are their needs and what needs to be happen for them to be met? what is their current situation? how is the diagnosis received? do they have a loved one(s)? what is the impact on personal, family, work? how is the person with dementia/caregiver coping? who is included in circle of care? who do they want to share diagnosis with?
- it takes a TEAM to help navigate healthcare system and understand disease process
- Healthcare professionals should reframe the current situation as “life beyond dementia” – what is important to person with dementia? what are their plans for the future? what are some lifestyle changes that can help them live life to the fullest of their abilities (adapted exercise program)? access to hop in emergency situation?
- Any unmet needs (whatever it is: environmental stimulation, comfort, sleep, fatigue, stress, pain, medication, ADL) should be evaluated on an ongoing basis
Thanks for a great informative session CIHR, and I appreciate the awareness of the issues faced by persons living with Parkinson’s + dementia!
CIHR also released a great YouTube video on a family’s perspective on dealing with dementia. Watch it below! much love.