Dementia symptoms result from damage to the brain caused by disease or injury. As brain cells die, it becomes difficult or impossible to store new memories or access old ones. Sometimes Dementia comes on suddenly, after a stroke or head injury. It often comes on more slowly due to conditions like Alzheimer's disease or Parkinson's disease. Most causes of Dementia cannot be reversed.
In the daily lives of people with Dementia, there are many moments where they are filled with paranoia. This may be about the place where they reside, possession of their belongings or recognition of their loved ones. In those moments of doubt and confusion, letting them know the whole truth is usually the first response of the primary caregiver. To what extent is that response then justified?
Lying to a person with Dementia: whole truths and lies
The general misconception about memory loss and Dementia often pushes people away from a clinical diagnosis. The stigmatisation around memory loss due to this fact enables people to be brutally honest with those suffering around them. Though people with Dementia have a greater chance of getting the proper treatment when diagnosed early, their caregivers often come from the position of prejudiced family history.
Telling people with Dementia the whole truth can frequently be a harrowing experience for them. A loving act to make them aware of their condition and surroundings can often lead to sudden shock, trauma and helplessness. In such instances, many choose to lie and pretend that there is no difference in the behaviour of the person affected in their daily life.
A critical element of caring for someone with Dementia is the communication when they experience a different reality from their families, particularly as the condition progresses with their age. This turns out to be one of the most challenging phases of the state and can be particularly difficult to manage by the primary caregiver.
Take, for instance, a situation when someone living with Dementia forgets the loss of their loved one and repeatedly brings their name up with an urge to meet them.
In this situation, a primary caregiver can either tell them the whole truth-
"the person has sadly passed." or lie and distract them from this particular person ", the person is busy right now".
In both these cases, the primary caregiver puts themselves and the loved one in a precarious position which affects the health and wellbeing of both. It is also essential to understand that regardless of their cognitive condition, people with Dementia are functioning and capable humans; knowing their life story, state of mind, and needs are equally important before choosing to lie or being honest with them. In the process of caring for people with Dementia, primary caregivers often make sense of these instances and adapt to the best of their potential.
Is lying okay?
In this process, however, they forget about people close to the one suffering who may or may not have experienced responding to their shift in time, their unfounded suspicions and general paranoia.
While these differences in approach become apparent as time progresses, most people choose to stay on the caregiver spectrum where they go from 'Whole-truth telling' through 'Looking for alternative meaning', to 'Distracting', 'Going along with' and finally 'Lying.'
An argument against lying is that it threatens freedom because it distorts your loved ones' information to make decisions. It is essential to remember that the ability to make decisions becomes more challenging over time.
While we tend to reduce Dementia to a condition that fundamentally causes memory loss, another symbol of Dementia is the gradual loss of other cognitive skills such as reasoning, judgement, logic, and insight. Without these abilities, the capacity for decision-making is compromised, and so is their perception of the world around them. It becomes difficult for them to understand new information, weigh the pros and cons, and sort through various options. Along the disease continuum, their capabilities regularly shift away from freedom and move towards a need for compassionate care.
Therapeutic Approaches for Dementia
The therapeutic approach called validation allows the caregiver to be completely present, tender, and affirming of the person with Dementia, regardless of the reality of the situation. Validating their experience discusses their emotional requirements without the use of logic, reason or judgement.
Therapeutic fibbing is when you turn the truth to fit the reality of a person who has Dementia. That is achieved if behaviour needs to be supported for the loved one's well being or safety. Therapeutic fibbing, when warranted, can positively affect wellbeing and health. This technique is not for situations where you need to tell the truth, such as a relative passing away if asked why the person doesn't visit anymore. However, it can help reduce emotional distress and stop troubling behaviour that the person with Dementia demonstrates.
Note to caregivers
While there is no one size fits all model for caregiver response, there are a few things to consider while responding to someone with Dementia.
- Take time out to evaluate the meaning behind the reality of the loved one.
- Take a flexible, empathetic and tailored approach to truth-telling.
- Avoid environmental lies.
- Record responses that work well with the person and reinforce them with others who are close to them.
It is normal to feel overwhelmed during instances where choosing between lies and truth is essential. It is suggested that you refer to a trained mental health professional to help your loved one and yourself understand and adjust to living with the condition moving forward.