When the Going Gets Tough: A Best Practice Guide for Caring for People Living With Dementia

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The Alzheimer Society of Canada website states that in 2011, there were 747,000 people living with some form of cognitive impairment, including dementia. This number is expected to double to 1.4 million by 2031. This means that many of us will be affected by dementia in some way, if we haven’t been already.

The Canadian government and health care sectors are well aware of the need for improved dementia care strategies, and a lot of research has been done on how to best serve this growing population. In some cases, dementia can affect a person such that his or her behaviour becomes very difficult to manage. Agitation, aggression, sundowning, and repetitive vocalizations are some of the most challenging behaviours to manage. In many of these cases, people living with dementia are over medicated or inappropriately managed which often results in other problems which can be quite disconcerting.

The Government of British Columbia has produced a document titled, “Best Practice Guideline for Accommodating and Managing Behavioural and Psychological Symptoms of Dementia in Residential Care: A Person-Centered Interdisciplinary Approach” (2012). In this 16-page document care providers at all levels will find ways to help improve the quality of care for people living with dementia, which includes better engagement with the person’s advocates and family members. The appropriate use of antipsychotic drug treatment is discussed, and it stresses that the first steps to best practice care are to look at environmental and behavioural modifications as well as psychosocial interventions.

In terms of pharmacological management, antipsychotic use in the older adult population comes with its own set of risks. In fact, there is a “black box” warning, as it is a well-known fact that there is increased mortality risk as well as other side effects that can be quite serious. Other psychotropic drugs, such as anxiolytics or benzodiazepines can also cause increased risk for falls and confusion. These medications should be used with caution. Other ways of managing the behavioural and psychological symptoms of dementia are now strongly encouraged as we are encouraged to shift away from using medication as a first line of defense. A risk and benefit analysis of the use of these medications is always recommended.

Person-centered care is now recognized as the most appropriate and effective way to care for people affected by dementia. It means that we consider each person as an individual, with his or her own unique history, personality, strengths, weaknesses, and challenges. It means that we take the time to learn about the person, which makes our care towards that person special, unique, and most effective.

For example, if there is a problem with a man who is up at night wandering the halls, we may want to look into his social and work history to find out what may be going on. We learn by talking to his family that he was a night shift supervisor for a large factory. This helps us learn more about his routines and lifestyle as he may be “back there” in his mind. This person-centred approach can be applied in all situations with every person we deal with. Many care providers believe that there is a reason for every behaviour. It is up to us to find out what the person is trying to communicate to us through their actions.

Another useful tool that is referenced in the aforementioned document is the concept of the person-centred “P.I.E.C.E.S. (TM)” approach. The cornerstones of this approach include looking at the following aspects of the person: Physical, Intellectual, Emotional, Capabilities, Environment, and Social. I am a P.I.E.C.E.S. trained assessor and these concepts help provide the best assessment and interventions from a person-centred approach.

A person-centred approach to the care of those with dementia or other related cognitive disorders takes into account aspects such as the person’s likes, dislikes, cultural and religious preferences, medical health, as well as their social history. An interdisciplinary team approach to care which includes professionals, non-professionals, family members and others with a vested interest is highly effective and recommended. Proper assessment, symptom management and ongoing evaluation is needed in order to continuously improve and manage a person’s care, especially as their dementia progresses and challenging behaviours present themselves.

Angela G. Gentile, MSW, RSW

Sources:

The Alzheimer Society of Canada: http://www.alzheimer.ca/en/About-dementia/What-is-dementia/Dementia-numbers

Best Practice Guideline for Accommodating and Managing Behavioural and Psychological Symptoms of Dementia in Residential Care: A Person-Centered Interdisciplinary Approach (2012): http://www.health.gov.bc.ca/library/publications/year/2012/bpsd-guideline.pdf

P.I.E.C.E.S. – http://piecescanada.com/

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Angela G. Gentile  MSW, RSW is a clinical social worker and author of the book, “Caring for a Husband with Dementia: The Ultimate Survival Guide”, “A Book About Burnout: One Social Worker’s Tale of Survival” and the “Dementia Caregiver Solutions” app for iPhone and iPad. She lives in Winnipeg, Manitoba with her husband and two adult children. She is passionate about all things related to Aging Well. For more information, visit: www.AngelaGGentile.com

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