If you have someone in your family with dementia, or you are working with dementia sufferers, it’s helpful to know as much as you can about it as not being fully informed may be quite distressing for both the patient and the family. Here are a few basic facts about dementia as well as some recommendations on how to cope with certain situations.
Although commonly referred to as a disease, Dementia is rather a set of symptoms that describe the condition. It relates to a person’s ability to function compared to how they functioned prior. Memory lapses, language difficulty, disorientation, difficulty completing daily routines and poor judgement are all associated with dementia. Alzheimer’s disease is the most common cause of dementia. The disease damages and kills brain cells. The best way of thinking of dementia is to think of it as brain damage due to disease. It is not a mental illness nor a personality disorder.
Don’t anticipate, adapt
Changes caused by dementia occur differently for each individual. There is no set pattern or predictable routine that you can anticipate. In fact, families soon learn that throughout the duration of the disease, there is no point in trying to discover patterns or make plans as to the way you should behave. Instead, it is best to adapt to situations as they unfold. What once was pleasing for the dementia sufferer one day may be extremely irritating for her only two days later. Because it is a complicated disease with baffling and sometimes disturbing outcomes, it is recommended that an external caregiver is brought in to help with your loved one, as it is almost impossible to have an objective perspective on events. Sadly, Dementia shreds communication. The dementia sufferer may not be able to understand the words that you are using, and likewise they may not be able to find the right words to say to you. This communication breakdown can make them feel panicked, stressed, and at other times, embarrassed.
Tips for communicating with a loved one with dementia
- Make good eye contact, while remaining relaxed and friendly.
- Speak clearly and slowly, but never in a baby voice or a condescending tone. Use clear language, but don’t appear to be bossy.
- If they don’t respond, wait a minute before trying again.
- Pay attention to your posture, voice and facial expressions so that your loved one can interpret your intentions when you speak.
- Think about the non-verbal cues you are receiving and giving.
- “Mirroring techniques” can work very well. This is where you add gestures to your words, so it is easy to interpret them.
- Be patient and don’t rush the dementia sufferer as it will become frustrating for both of you.
- Relax a little and learn to bend the rules. If the dementia sufferer wants to sleep with their clothes on, the world will still keep turning. If your father calls you by the wrong name, simply answer him anyway.
Helping your loved one with dementia around the house
- Make sure the water heater is set to the lowest temperature to avoid burns. It is common for people with dementia to lose their ability to judge temperature.
- Make sure all handrails are secure.
- Remove any tripping hazards.
- Carefully monitor noise levels and be aware that hearing aids magnify background noise, which can be particularly frustrating and irritating for dementia sufferers. Such noise can be chaotic and overstimulating, increasing their confusion and anxiety.
- Simplify the colours in the house, creating as much contrast as possible. E.g. if the sheets are white, have a blue pillow so that it is easier to identify.
- Ideally it is best for dementia sufferers to be living on the first floor. All windows and the balcony should be scrutinised as they could also be potentially hazardous.
Understanding their frustration
With dementia, irritability can often occur due to not understanding something about the current situation. They can often appear very agitated or upset without being able to articulate why. If your loved one, or someone in your care is behaving strangely and you’re not quite sure what to do, consider the following possibilities:
- Are their clothes uncomfortable?
- Do they need to go to the bathroom?
- Are they thirsty or hungry?
- Are their medications causing any uncomfortable side-effects?
- Is she/he not feeling well?
Delusions, hallucinations and catastrophic reactions
The above three reactions are typical amongst dementia patients. Delusions are when someone with dementia has untrue notions that they firmly believe to be true, such as thinking someone has been stealing or lying. Hallucinations are when someone sees or hears something that isn’t really there. A catastrophic reaction is a seemingly trivial or inconsequential event that brings about a catastrophic reaction. This is usually due to some type of anxiety when there is too much stimulation and chaos at once.
When these sorts of episodes arise, it’s best not to argue with the sufferer of dementia as this is pointless. The fact that it is pointless must be accepted. Instead, it’s best to remain calm and tell them that you are listening or simply agree with them and let them know that you are there. Above all, understand that the condition can be just as frustrating and upsetting for them, if not more so, than for you.