How to ensure optimal care for people living with dementia

As we wait for the dementia tsunami to hit nurses in five years’ time – baby boomers reaching the age when the condition becomes a common occurrence – the nursing profession must prepare for the onslaught, says dementia specialist Patricia Pope

As we wait for the dementia tsunami to hit nurses in five years’ time – baby boomers reaching the age when the condition becomes a common occurrence – the nursing profession must prepare for the onslaught, says dementia specialist Patricia Pope

Picture: Science Photo Library

Whether we work in a clinic, in the community, in a care home, on an NHS ward or have a desk job administrating services, we need to have good, solid practical information to pass on to each other – and to the public.

Nurses are that front line – the great wall of health professionals that bridges the gap between the public and the medical community. 

There are 106 types of dementia and they effect the brain differently in several aspects – but there are five symptoms that most of them share:

• Communication loss.

• Time shifting.

• Obsessive compulsions.

• Sleep disorders.

• Memory loss.

Communication loss

Communication loss tends to be the one that interrupts the delivery of care, as not only do people with dementia lose ability to communicate with us, they also lose their comprehension of communication from us. This is one fact I stress when explaining dementia to family carers or training staff. If we realise that messages are not getting through, then we take time to consider alternatives.

Some people lose verbal communication, their words start to escape them (firstly nouns followed by verbs) and by the severest stage the words have reduced to one or two words which are repeatedly used.

‘People with vascular dementia tend to retain words and lose understanding of visual communication’

Language is retained in two areas: Broca’s area (associated with speech production and articulation) and Wernicke’s area (associated with comprehension). Dementia damages both areas and thus the level of correct speech pattern matches that of the level of comprehension.

Alzheimer’s tends to attack the brain’s left hemisphere first, resulting in damage to the person’s verbal skills, vocabulary and comprehension.

Others lose non-verbal communication and cannot read facial expressions or body language, thus everything and everyone becomes a threat. They often present as non-compliant with care, paranoid or aggressive.

When a person loses the ability to read other’s non verbal communication, they go into protective and defensive mode and are reduced to flight or fight as their only coping mechanism. People with vascular dementia, however, tend to retain words and lose understanding of visual communication.


Time shifting

This usually occurs in the moderate stage of dementia and is literally a shift in reality back to another period in their life.

‘Reality orientation is a technique that is used to try to provide the person with dementia with a greater understanding of their surroundings’

Research has shown that people who have dementia primarily return to somewhere in their life between ten and 30 years of age. This is referred to as the reminiscence bump. Somewhere in that 20-year time frame is where older people with dementia find themselves – it is as real to them as our reality is to us. The rest of their lives becomes a ‘twilight’. It is as if they have not lived that life yet and are living back in their past. Nurses cannot bring them back to reality and so, for their well-being, it is best to enter their reality.

Nurses have to find them, and the clues will be there. Who are they looking for? Where do they want to go? What is their main worry? We search.

If, for example, a person of 83 thinks they are 20, they may not recognise their spouse/partner and may perceive their adult children as their own mother and father. Without support, the family will be confused and may be attempting to orientate.

‘Nurses can help to support people with dementia and their families by offering some coping strategies’

Reality orientation is a technique that is used to try to provide the person with dementia with a greater understanding of their surroundings, possibly resulting in an improved sense of control and self-esteem.

This type of orientation can trigger feelings of anxiety, agitation and aggression. Nurses can help to support people with dementia and their families by offering some coping strategies.

Obsessive compulsions

Obsessive compulsions occur when anxiety levels peak due to major changes in people’s lives of which they have no control. Having dementia and losing many of your mental abilities is obviously a major life change. Levels of serotonin also drop and this can lead to obsessive behaviours.

The main point to keep in mind when it comes to this symptom is that the obsession is a coping device and nurses should not attempt to eliminate it.

If you take away the obsession the person will become psychotic. Therefore, nurses’ pathway is to mitigate the obsession, make it safe, maintain the person’s dignity and allow them to use the behaviour to cope. With insight and creativity, it can be achieved. Embrace the obsession and manage it – do not remove it.

Sleep disorders

Pick up any dementia publication today and you will see how researchers are discovering more about the link between sleep and dementia.

We need less sleep as we age, and people living with dementia have great difficulty entering the phase of deep sleep. They nap (light sleep) and experience rapid eye movement sleep, known as REM sleep (dreaming), but they seldom achieve deep (subconscious) sleep when the brain rests. The estimate is that a patient with dementia requires about four hours of sleep in every 24 hours.

‘People with dementia do not sleep well. Medication is not the answer. Nor is keeping a person with dementia awake and busy all day’

Sleeping pills are often overused to medicate people with dementia. This overuse leads to the dementia brain becoming toxic, the level of cognition further reduced, with falls escalating – thus fractures occur that require surgery and the outcome is hospital beds filled with dementia patients. 

People with dementia do not sleep well. Medication is not the answer. Nor is keeping a person with dementia awake and busy all day. As the brain cannot achieve deep sleep, activity just makes them more mentally exhausted. Allowing a dementia patient to nap on and off throughout the 24 hours in a day is our only viable solution.

Services need to staff adequately to care for this reality, especially in home care environments, but also on hospital wards and in care homes. Never tell a person with dementia they should be sleeping, it’s not a choice. Knowing the person’s biorhythm around sleep is a help: are they a lark or an owl? When did they sleep best? If we know we can focus on that period of the day for sleep, which may prove more effective than at other times.

Rituals are important. For example, what was the person’s preparation for sleep? We need to remain person-centred, not enforcing institutionalised routines on the person who is living with dementia. The best advice is to stick to the individual’s routine as much as possible.


Memory loss

In the UK, we have linked dementia and memory loss solidly together as a pair. We have used the terminology ‘long-term’ and ‘short-term memory’ for more than 40 years when discussing memory loss. But it’s not that simplistic. We have various areas of memory storage in our brains, specific to the types of memory being stored, and dementia does not take all of these areas. 

  • Procedural memory is our storage of tasks: how to go to the toilet, wash ourselves, climb stairs, turn on a tap, write, ride a bike and drive a car. It’s our tasks of life that are learned and stored; they appear to go on auto pilot and we just do them. It’s multitasking. One can walk, hold a conversation as well as prepare breakfast all at the same time. Procedural memory – sometimes referred to as muscle memory – makes all of this possible.
  • Semantic memory is one’s intelligence storage area: facts and figures, rules and regulations, things that are acquired at school, university and in one’s career. It’s also general knowledge: the storage of information about one’s own passions, hobbies and pet peeves. It’s our intellectual memory. It aides us in being logical and having full capacity to make decisions.
  • Episodic memory is the episodes of our life that we have recorded. Not every moment of our life is stored, just the emotional events, all the good, bad, sad, mad, exciting, embarrassing things that occur in a life. When the memories surface so does the emotion and the person feels that same emotion all over again.
  • Limbic memory contains the body’s rhythms. Biorhythms, music, poetry, times tables and Shakespearean sonnets are good examples of limbic memory. 

Dementia can destroy procedural and semantic memory. Limbic and episodic memory tend to be strong, thus music and reminiscences are our favourite ‘bridges’ into the dementia mind.

‘Keep in mind that dementia always controls the pathway of care’

As nurses, we need to have a strong understanding of dementia in general. We have many patients with comorbidities and, if they are older, the chances are high that dementia – or its precursor mild cognitive impairment – is on board.

Keep in mind that dementia always controls the pathway of care. Expectations for care compliance for a patient without dementia are higher than for a patient with dementia. Achievable outcomes will not be the same.

How to communicate effectively with a person who is living with dementia

  • A simple assessment can be done whereby you offer two sentences of polite small talk (talking about the weather is always a winner) and observe if the person responds appropriately with words or just mimics your facial expressions and gives small generalisations in response.
  • Use the best avenue of communication you can with the person. If words are not forthcoming, use facial expressions, props and body language.
  • It’s best to talk to people who are living with vascular dementia.
  • Use facial expression, props or body language for people with Alzheimer’s (they understand non-verbal communication).
  • Never ask direct questions. For example, change: ‘What is your name and date of birth?’ to ‘Mary Smith?’ The person will immediately give you their name. ‘Your birthday is June 21, 1939?’ Again, they tend to correct you. 
  • Never ask how old they are. Always ask for the date of birth, as our age changes every year, whereas our date of birth never does.

About the author

Patricia Pope is a dementia consultant and trainer at All About Dementia

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