Many of the challenges of interacting with or being a care partner with someone who lives with dementia stem from our own behaviour and expectations.
Memory expert and author Dr. Bill Beckwith suggests 10 key things to keep in mind to help ease the stresses and reduce the anxiety levels of everyone involved:
1) People with dementia (PWD) are not lazy
Rather, many lack the initiative they may once have had. They may become apathetic and less likely to initiate activities or discussion than they previously did. They need environment and social interactions to encourage them to participate in activities and engage with others.
2) Memory loss is not intentional
PWD do not display “motivated forgetting.” They do not remember what they “want to” or “have to.” They do not have “selective memory loss.” They have no control over what they remember and what they forget, which may change from one minute to the next.
3) QTIP (Quit Taking It Personally)
Don’t take comments, anger, or lack of appreciation personally. Despite the fact that those with dementias may reflect your mood back to you or say offensive and hurtful things, they are not acting with deliberation. Besides memory loss, dementia is marked by poor judgment, a decline in the ability to think “logically,” and a tendency not to follow social conventions. Dementia produces a developmental shift to child-like behaviours and reasoning.
4) Inconsistency is the rule
Even as the disease progresses, PWD experience lucid moments as well as flashes of insight, and, while these moments become less frequent and less clear as decline progresses, they may occur until the very end.
5) Don’t challenge delusions or hallucinations
Arguing and/or using logic to counter false beliefs or perceptions (e.g. someone stole my car, there are strangers in the house), is a waste of time and energy. Most delusions and hallucinations are harmless and if not confronted will resolve if approached with compassion and distraction. Confrontation is likely to increase confusion, frustration, agitation; it may trigger anziety and/or aggression and result in PWD being unnecessarily medicated; that’s why it’s so important to never never argue.
6) Don’t try to force memory
Persons with memory loss forget that they forget. Repetition and reminders do not help recall as the disease progresses and the memory becomes more severely impaired. Trying to force recall or asking “Don’t you remember?” may elicit frustration, depression, or agitation. Don’t ask questions, make statements instead.
7) Stick with it!
Interactions with someone who lives with dementia can be uncomfortable. It’s tiring to constantly deal with repetition, lack of initiative, and self-focus. However, PWD need social interactions as much as the rest of us. In fact, they may need us to connect and engage with them more than ever. Don’t abandon those who live with dementia just because it’s the path of least resistance.
8) Be realistic
Don’t hold onto false hope that PWD will improve. Dementia is irreversible and often progressive. Current medications may slow the rate of decline but they do not reverse or stop the deterioration of brain cells. On the other hand, don’t give up on someone who has dementia. Opportunities for growth, healing and beautiful life experiences remain for all of us until we finally die. Take advantage of what skills remain.
9) Don’t compare
Although there are similarities among individuals with dementia, there are a multitude of individual differences as well. Not everyone becomes incontinent, aggressive, unmanageable, subject to sundowning, or forgets who loved ones are. People are unique. People with dementia are also unique – they are still people!
10) Go with the flow
Those with severe memory loss live in the moment – they may not recall the recent past or be able to anticipate what comes next. The environment and people around them must draw them in and simplify their interactions with the world. More about going with the flow here.
Besides these 10 important things to remember, it’s also vital for caregivers not to forget their own needs.
Dr. Bill Beckwith is a professional psychologist and speaker. He has his MA in experimental psychology and a Ph.D. in clinical psychology; he was a university professor for 12 years. He earned many teaching awards and developed a memory disorders clinic and a center for excellence in memory care. He has completed more than 3,000 memory evaluations, and is the author of Managing Your Memory.