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- Published: 29 July 2015
By Mary Schulz
Imagine this...
You are an 87 year-old widowed woman living in a nursing home. You have a form of dementia. Imagine that you believe you are 23 years old, living with your husband and 10 month-old baby.
You awake from a nap to find that you are in a strange house.
A man approaches you and sits down beside you. He starts talking to you. You ask the man politely where your husband is. He tells you your husband is dead and that you live in a new home now. You know this is not true; after all, you just saw your husband a few minutes ago.
How do you feel? How might you behave?
You get up to leave to find out for yourself where your husband and baby are. The man tries to stop you. You try the door but it is locked.
Now – how do you feel? What might you do?
The man puts his hand on your arm and tries to lead you back into the lounge.
Now, how do you feel? How might you behave?
You struggle. You scream. You panic. You slap the man in your efforts to get away. You have to find your husband! Where is your baby? You must get away!
Now.... Do you think your behaviour might be interpreted as “challenging”? Violent? Aggressive? Abusive? The scenario above describes a hypothetical but rather common experience of a woman living with dementia in a long-term care (LTC) home. But let’s step back for a moment and talk about dementia.
What is dementia?
Dementia is not a specific disease. Many diseases can cause dementia, the most common being Alzheimer's disease and vascular dementia (due to strokes). Some of the other causes of dementia include Lewy Body disease, head trauma, frontotemporal dementia, Creutzfeldt-Jakob disease, Parkinson’s disease, and Huntington’s disease. These conditions can have similar and overlapping symptoms.
Approximately 747,000 Canadians are currently living with Alzheimer’s disease or other dementia. Within a generation, this number could reach 1.4 million. (Ref: Rising Tide). Additionally, 57% of seniors living in a residential care home have a diagnosis of Alzheimer’s disease and/or other dementia¹, and 70% of all individuals diagnosed with dementia will die in a nursing home².
Dementia and abuse
People with dementia are at increased risk of different forms of abuse (e.g. verbal, physical, financial and psychological abuse as well as neglect) due to their cognitive impairment, loss of capacity, communication challenges and increasing dependence on their caregivers. In fact, abuse of older adults with dementia affects between 5.4% (Pavez et al. 1992) and 11.9% (Coyne et al. 1993)
The person with dementia may also be seen to “abuse” others – such as family members or health care providers. This is sadly quite common in LTC homes and can lead to the use of various forms of restraint including the administration of antipsychotic medications.
Another way of looking at ‘abuse’ of people with dementia
The frequency of Behavioural and Psychological Symptoms of Dementia (BPSD) tends to peak in the middle stages of dementia. Symptoms of BPSD may include delusions, hallucinations, depressive symptoms, agitation and hostility³. Some types of BPSD are more common in certain types of dementia, such as visual hallucinations with Lewy body dementia and sexual disinhibition with frontotemporal lobe dementia. Caring for persons with BPSD requires education regarding strategies and particular approaches for the various behaviours and symptoms.
Responsive Behaviours
You will often hear these challenging behaviours (BPSD) described as “responsive behaviours”. People living with dementia are neither typically “agitated” nor “aggressive”. Certainly responsive behaviours, including agitation and aggression, do occur but they are typically a response to an unmet need. People with dementia in the later stage cannot easily express their needs verbally and will do so through their behaviour. Responsive behaviours are challenging behaviours, such as agitation, wandering or withdrawal. The term reminds us that the actions, words and gestures of people with dementia are a response to their current environment (internal – think ‘pain’) and external (think ‘noise’) 4.
To suggest that dementia, agitation and aggression go hand-in-hand further contributes to the stigma of this condition. When trying to understand the behaviour of a person with dementia, it is vital to remember that all words, gestures and actions communicate meanings, needs and concerns. Rather than labelling a person with dementia as “violent” or “aggressive”, it is more helpful to describe their behaviour in terms of their unmet needs. This is the premise behind the popular educational program called PIECES.
A person-centred approach is vital
What is a person-centred approach or philosophy?
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Recognizing that individuals have unique values, personal history and personality
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Each person has an equal right to dignity, respect, and to participate fully in their environment
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The ultimate goal of a person-centred approach is to create partnerships among staff, individuals and their families to enhance quality of life and quality of care
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Services and supports are designed and delivered in a way that is integrated, collaborative, and mutually respectful of all persons involved.
Person-centred care has its origins in the client-centred psychotherapy of Carl Rogers (1961) and has been adopted in the field of dementia, pioneered by Tom Kitwood (1997) to enhance communication and relationships between people with dementia and others.
If you work as a health care provider, how often have you heard a new client described this way?
“Joan is an 89 year old widowed lady who is a nurse by background. She loves art, baseball and dogs. She enjoys travel and likes to knit. Joan raised five children and is a devout Catholic. She does not like bingo.”
I question the ability of this -all too common- description to sum up the days and years, joys and disappointments, thoughts and feelings of Joan’s 89 years. The better we know the person (the whole person), the less likely that undesired behaviours are going to occur.
Take a moment to reflect:
What makes you very irritable? What really gets under your skin? Maybe certain types of music played at a loud volume? Do you react more ‘aggressively’ under particular circumstances? Especially if you are stressed, tired, overwhelmed, trying to hold a conversation, balance your chequebook or read a book? If you could not talk or move, how would you convey your irritation? Chances are you would yell, hit, do something to express yourself, and draw attention to your displeasure in the hopes that someone will do something.
People living in LTC are no different. Because of the nature of care in a LTC home and the fact that it is a communal living environment, the following common situations in LTC can lead to responsive behaviours:
- Bathing
- Mealtimes
- Care
- Waiting for the elevator
- Participating in group leisure activities
- .....and the list goes on
Unmet needs + communication challenges = Responsive behaviours
This is not to say that a person with dementia is never aggressive or violent. People with dementia are still people. There is a saying, “If you have met one person with dementia, you have met one person with dementia”. The person may have always had a short fuse. They might have a long history of mental health problems that impair their judgement or have impacted their personality. They might even have been convicted of violent crimes. But it is our job as health care providers to ensure that we have taken the time and used all the helpful tools available to us to assess the person: why are they acting in this way? Are they in pain? Are they afraid? Are they misinterpreting what I am saying to them, doing to them, asking of them? Is the light in their eyes and they cannot see what is happening around them? Do they have visual or hearing impairments, which distort their interpretation of things taking place near by? Have they experienced any form of abuse in their past?
What we know about the person can help us unravel the meaning behind the behaviour so that we can change our approach, alter the physical environment or assess the person’s physical wellness to make it less likely that the person will need to behave in a way that is disturbing to everyone.
If you have identified some clients of yours, living with dementia, who are typically considered very difficult to care for, please ask yourself:
Do we really know this person? What do we know about his/her unique personality, history, preferences, habits, routines, likes and dislikes that might be contributing to her challenging behaviour? Who can help us to figure this out? Think creatively; many people do not have family. Who else knows the person and can help us with our detective work?
What can I, as a healthcare provider, do to make my client feel safer, less threatened, more comfortable and at ease? What environmental changes can we make to help people living in our LTC home feel more comfortable? What processes can we put in place to become more person-centred in our approach? Our goal as healthcare providers is to make each day – each moment- the best possible for every resident living in our LTC homes. We cannot expect people with dementia to learn to adjust and adapt. The change begins with us!
Mary Schulz has been the Director, Information, Support Services and Education at the Alzheimer Society of Canada since 2006.
A Social Worker by background, she has spent her career in health care, primarily working with older adults and their families.
Mary’s professional aim has remained constant for three decades: to work with others to improve the experience of living with dementia in Canada.
¹Canadian Institute for Health Information, Caring for Seniors with Alzheimer’s Disease and Other Forms of Dementia, August 2010.
²Mitchell S, Teno J, Miller S, Mor V: A national study of the location of death for older persons with dementia. JAGS 2005, 53:299-305
³ Schwartzkopf, C. E. & Twigg, P. (2010, p.545). Nursing management of dementia. In K. L. Mauk (Ed.). Chapter 15, Gerontological Nursing: Competencies for Care (pp. 530‐557). (2nd ed.). Mississauga, ON: Jones and Bartlett Publishers Canada).
4 http://brainxchange.ca/Public/Files/Behaviour/ShiftingFocusBooklet.aspx
REFERENCES / LEARNING MORE
- Read the 7 key elements to providing person-centred care in LTC homes
- Culture Change: www.alzheimer.ca/culturechange
- A best-evidence review of intervention studies for minimizing resistance-to-care behaviours for older adults with dementia in nursing homes, Konno, R. et al, Journal of Advanced Nursing. 70 (10), (2014) 2167-2180.
- Review: Resident outcomes of person-centred care in long term care: A narrative review of international research, Li, Junxin and D. Porock. International Journal of Nursing Studies. SI (2014) 1395-1415
- Implementing national guidelines for person-centered care of people with dementia in residential aged care: effects on perceived person-centeredness, staff strain, and stress of conscience, Edvardsson, D. et al. International Psychogeriatric Association (2014) 1-9
- Using the Newcastle Model to understand people whose behaviour challenges in dementia care. Jackman L, Beatty A. Nursing older people (2015) Mar 2;27(2):32-39
- “Shifting Focus” at the Brain Exchange http://brainxchange.ca/Public/Files/Behaviour/ShiftingFocusBooklet.aspx
- All About Me booklet: http://www.alzheimer.ca/allaboutme
