Scientific research reveals that not the changes in memory in itself, but the accompanying changes in behavior pose the biggest challenge, both for the persons themselves as well as their professional and family carers. Behavioral changes include agitation or even aggression, but also more withdrawn behaviors such as depression or anxiety. To narrow it down even more, people with dementia can start: pacing or wandering (seemingly) without a purpose; repeating questions; display sexually not appropriate behaviors or physical or verbal aggression. These behaviors typically occur in the middle stages of dementia. It is the reason why family carers feel obliged to admit their loved one to a long term care facility.
A recent development is to no longer refer to these behavior changes as ‘problem behavior’, but as ‘misunderstood behavior’. When we use the word misunderstood, it gives us, as the observer, an active role. It makes us ask the question: if and what meaning could this behavior have to the person?
These behaviors are frequently treated with medication, sometimes successfully, for example if the person suffers from a depression or psychose on top of the dementia. But often medications do not have the desired effect and can even lead to negative outcomes, such as a further decrease in memory function or more risk of falling.
There are alternative theories that explain the behavioral components of dementia:
Learning theory (Teri e.a., 1997): builds on the theory of classical and operant conditioning (Skinner). Meaning: a certain response can actually strengthen misunderstood behavior. Imagine if a person with dementia tries to ask for attention (e.g. because feelings of loneliness), but because they cannot find the right words, they do not receive help. When the person starts shouting, they may receive attention. If shouting behavior is repeatedly ‘rewarded’ with attention, this person has learned that shouting is the way to get what one wants.
Stress threshold model (Hall & Buckwalter, 1987): describes that people can deal with a limited number of stressors. How many divers between people and also between situations. When one reaches their limit, it may lead to misunderstood behavior. It is easy to imagine how this may happen to a person who is recently admitted to a facility: a new environment with less privacy, many people, new sounds, smells etc and a complete new routine.
Unmet needs paradigm (Cohen-Mansfield, 2001): postulates that misunderstood behaviors occur when simple basic human needs are not met, for example because they are not expressed or interpreted correctly. These needs include simple physical and psychological needs, like being in pain or having hallucinations, but can also refer to a lack of activity, stimulation, a role or company.
MP2 acknowledges all these theories with a focus on the Unmet Needs Paradigm. The importance of the second P in MP2: Participation. If a person does not experience meaning, connection or a role, it is easy to become isolated and display behaviors that other people may not recognize.
If we enable people with dementia to maintain activities, tasks, a social life, they may well forget to display misunderstood behaviors. Mindful and positive attention and interactions can help to find out and meet people’s basic human needs.