One of the most common misconceptions about dementia is that individuals stop experiencing emotions like you and I, when in fact this is not the case.
Individuals living with dementia continue to feel a variety of emotions. For some these feelings and emotions can be heightened, and if this is unrecognised it can lead to more serious conditions such as anxiety, depression and complete withdrawal.
Why is distress a common emotion?
Dr Tom Kitwood, a renowned researcher in dementia and person centred care, has identified that individuals living with dementia have 5 basic needs that are paramount to maintaining an individual’s wellbeing and sense of self;
Comfort, Identity, Attachment, Occupation and Inclusion
When a resident with dementia displays signs of distress, agitation or aggression then it is a sign of ‘ill-being’ – a lack of one or more of the above 5 wellbeing needs. How a carer responds to this can make all the difference for the individual, care staff and other residents within an aged care facility.
Distress, confusion and upset are common symptoms of the disease of dementia and having the right strategies and engagement opportunities built into a resident’s daily care plan can avoid unnecessary use of anti-psychotic drugs, reduce falls and social isolation and help improve the quality of the living and working environment for everyone.
So here are 3 effective strategies to trial with your residents:
- I’m on your side
The sense of having a reliable support and a sense of someone being ‘on their side’ is key to someone with dementia. The feeling of having someone that will advocate for them when they may no longer have the capacity to do so is priceless and offers a huge amount of comfort and peace of mind for someone that experiences high levels of anxiety as a result of their dementia. This sort of rapport offers the resident an opportunity for connection, love, acceptance and significance. These emotions are critical to a resident’s sense of wellbeing and self esteem.
- Focus on what can change, not what can’t
Dementia is a progressive terminal illness that affects the ability to lay down certain types of new memories, disrupts information processing, alters spatial awareness and motor control and significantly impairs decision-making. These brain changes can lead to common problems such as residents forgetting their walking frames, engaging in risk taking behaviours, asking the same question multiple times and even forgetting what objects are and what they are used for.
These are all common symptoms of the breaking down of neural pathways within the brain, which we can’t change.
Despite this being the case our typical model of care delivery is aimed at trying to change the individual with dementia when they have very limited capacity to change. They are dealing with the disease the best they can. The real focus should be on changing our, the carers approach, and the surrounding environment.
Frequently care is task focused and offers very little scope for really supporting the resident and catering for their changing needs. We suggest ditching the fixed agenda approach and focusing on seeing the individual for who they are and how they present in that moment when trying to deliver care. More often than not this more relaxed and client centred approach can avoid commonly met resistance and refusal of personal care. Try going slower; hurrying tends to raise your tone of voice and displays body language that can promote fear and anxiety in those that are unaware of your agenda.
If there are signs of distress look to the environment for clues, is there adequate stimulation of the right type for that resident? Is it to hot or cold? Are they offered opportunities to engage even if they have limited verbal and physical capacity? Is there too much stimulation or is their choice of seating causing them discomfort and limiting their capacity to engage?
Seek out the root cause not the quick fix. Ill-being can quickly be turned into wellbeing with the right approach and understanding of what needs our residents need met.
- Mind Your Own Emotions
It is easy to become frustrated, annoyed and upset when the resident you are supposed to be caring for isn’t allowing you to do your job and deliver care. It’s even more frustrating when they seem to just ignore your repeated requests to sit down in order to avoid a fall and keep them safe. It’s harder again to remain calm and composed when they are calling you abusive names, making sexual advances or accusing you of stealing their belongings.
Such behaviours in residents attract labels such as “nasty”, “sexually inappropriate”, “abusive”, “aggressive” and are frequently bandied around at handover times. Many of the symptoms of dementia often lead to inappropriate and unfair labelling of our residents, which can lead to a state of ill-being and negatively impact the level of care received.
The fact is we are the source of our own frustrations and difficulties when it comes to caring for those with dementia. Too often our frustrations come out of a lack of understanding of how the disease process is effecting the resident, and from our own unrealistic expectations.
Care staff can have a tendency to interpret negative behaviours experienced as a personal attack rather than fully understanding and accepting that these are common symptoms of the disease. In dementia, there is a break down of important brain functions such as social behaviour filters, risk hazard processing and the ability to control and carry out voluntary movements.
It is important to remember that whilst creating new factual memories is impaired in dementia, emotional memory in dementia is well preserved. This is why even though a resident may not remember your name, they may vaguely recall a negative emotional experience with a carer and as a result have a lack of trust and refuse care.
When you can no longer remember who people are, then reading body language becomes crucial to determining if someone is friend or foe. An unfamiliar face coupled with negative body language, a hurried pace and a high pitched voice, combined with no clue regarding what’s going to happen next can incite fear and anxiety in many a resident with dementia.
The best approach is a slow, steady and positive one.
If you want to change the types of behaviour exhibited within your residents then we must change the way we approach our resident, and better educate ourselves and our staff that common symptoms are as a direct result of the condition that they have and are not a deliberate attempt to annoy you.
Our advice is ‘review your approach and expectation’. Change them to suit the resident at hand and their cognitive and physical capacity. Asking and expecting an individual with short term memory loss to remember that you asked them to sit down 5 minutes ago just isn’t going to happen, so lets all stop tormenting ourselves.