In 35 years of working with people living with dementia and the aged population, I have lived by Thomas Kitwood’s philosophy, of person centred care: I am caring for a person with dementia, not a person with dementia. I am caring for a 90-year-old man living with heart disease, kidney failure and lung disease not a 90-year old man living with heart disease, kidney failure and lung disease. It is so important that we see the person first and treat him/her as you expect others to treat you. Regardless of age, diagnosis, ethnicity, religion, family relationships, etc., never forget who the person you are caring for/working with is.

Always practice with kindness, respect, integrity, compassion and understanding.

Always try to engage, enable and empower the aged person and/or the person with dementia.

And remember that dementia is not the total character of the person, there is so much more; a person who was once a child, a young adult, a working person, a family person who contributed to society, who influenced, guided and shaped the lives of those around him/her. That person, the inner being is still there and will always be right until he/she takes a final breath.

Changes I would like to see

Sadly, here in Canada, we are still far behind the UK, Europe and Australia with regards to dementia care. We do not have a National Dementia Strategy for Canada, and whilst some work has been done at the Provincial level, e.g. end of life care and public awareness, there are still so many areas not yet dealt with e.g. dementia care in nursing homes, best practices in dementia care, increase caregiver education and supports.

Changes I would like to see:

• Standardized education and training to improve and enhance dementia care/aged care skills and knowledge. Should be mandated for all community, residential care and hospital employees in the public and private care sectors. Dementia care and gerontological care should be part of the curriculum for nurses, doctors, social workers care workers and allied health care professionals e.g. physiotherapists, with ongoing education and training provided at minimum once a year.
• Removal of labelling terms e.g. wandering, difficult behaviours, prone to aggression, elopement risk, sundowning. Using these terms only further stigmatises people with dementia and socially excludes them from participating in, contributing to, and enjoying community life whether they live in a nursing home, in assisted living or in their own home.
• Stricter guidelines around the use on anti-psychotics and sedation medications in the aged/dementia population. Narcotics (opioids) can only be dispensed with a triplicate prescription. I believe we should do the same with anti-psychotic, anti anxiety medications too. If there were tighter controls and accountability, I anticipate this would change how doctors view these medications and realise they should only be used at the ultimate last resort e.g. risk of harm to self or others
• Increase in affordable and appropriate housing, availability of affordable community care supports 24/7, transportation and meal programs. I want the aged population and people with dementia to feel they are valued and their learned life experiences and knowledge can help contribute to and enhance the lives of everyone e.g. children, teenagers and adults. We seem to have moved away from the close-knit communities where everyone knew one another to a more private, distant, self absorbed society where our actions and life style choices seem, whether intentional or not, to exclude and isolate many people especially the aged population and people with dementia
• Accountability – when the Government allots funds to agencies and other healthcare sectors to help promote the health, safety, care, and well being of our aged and/or dementia populations, there needs to be constant monitoring, ongoing assessments and reviews of the effectiveness of a program, and significant penalties for those who do not comply. Furthermore, people employed to provide care to these vulnerable populations should also be subject to the same monitoring and follow up.
• To see an end to the isolation and exclusion of our aged/dementia populations; the adoption of a holistic person-centred approach to the provision of care; implementation of 24 hr. enhanced services and supports to assist the person and caregiver/family; and the involvement and collaboration of all sectors of society: businesses, private companies, government health care agencies, private care agencies and voluntary and not-for-profit sectors.

Tracey Maxfield, RN., BSN., GNC ©., DDS., CDP

June 12, 2018