Fluctuations
While we know that the symptoms of dementia generally progress over time, people often describe fluctuations (variations) in the symptoms, right from the onset of the diagnosis. Symptoms might seem as if they have got worse for a while, and then return, in due course, to their previous level.
Some people living with dementia describe these fluctuations as happening moment by moment, hour by hour, day by day, or at particular times of the day, week, month or season.
These fluctuations occur to some degree in most types of dementia but are particularly prevalent in Lewy body dementia (LBD). The variations described can be in attention, awareness, thinking and alertness. People also describe variations in their practical abilities.
What causes fluctuations in the symptoms of dementia?
A degree of fluctuation in terms of attention, cognitive performance, irritability, etc. is common to all of us and is affected by many things. For example, whether we are comfortable, hot, cold, well fed, stressed, etc. Like many things, this can become more extreme in dementia. We don’t know exactly what causes fluctuations in the symptoms of dementia, but it is likely to be a combination of how the proteins that cause dementia are accumulating in the brain, disrupting the normal brain circuitry, and how this is influenced and impacted by changes in general brain chemistry and also due to fluctuations of the neurotransmitters, which are the brain chemicals that mediate signals within the brain.
However, we should not overlook the impact of external stimuli and how they are modulated. It can be a mistake to think of things as being exclusively psychological and psychiatric or neurological symptoms. Just because something is going on in the brain, doesn’t mean that changes in people’s everyday physical surroundings and social interactions won’t affect their day-to-day functioning.
Changes in the way that messages are sent and received within the brain, abnormalities in the levels of neurotransmitters, such as acetylcholine and dopamine and disruptions, and changes in the usual functioning of brain cells and circuits can all contribute to fluctuations in cognition and attention.
People living with dementia tend to compensate as far as possible for changes in cognition and ability, by organising and adapting the environment and using memory or other types of aids. Even a slight reduction in the ability to manage this adaptation can result in significant changes in functioning.
As well as physiological causes for fluctuations in the way we function, the cognitive demand of the immediate environment can also play a part in how well we function within it. For example, trying to have a conversation in a room where other people are talking and background music is playing, or paying for items in a shop while aware of pressure from others in the queue. The impact of this additional cognitive demand may last longer than the immediate moment in which it occurs. See the RDS section on the home environment for further details.
Other factors such as physical and mental health, getting enough sleep, eating a healthy diet and environmental factors such as temperature and lighting can all contribute in part to the way and frequency with which these fluctuations occur.
It is important to rule out any physical cause such as infection, side effects of medications, or stress as the cause of fluctuating awareness and ability. Urinary tract infections are well recognised for causing confusion and very marked changes in cognition for people living with dementia.
These fluctuations in abilities and alertness can be frustrating for people living with a diagnosis of dementia, their family, friends and carers. It makes it difficult to plan and means that it is hard to know how long to allocate for particular tasks or activities. See the RDS website pages on adapting practically and adapting emotionally for further information.
Examples of fluctuations
“I find it so confusing– yesterday mum was able to get up, dressed and down for breakfast with hardly any help at all from me– she even made me breakfast when she came down, and helped me plan the food shop. Today it has taken us over an hour just to get dressed and we are still fiddling around trying to get her shoes on and fastened…”
“Some days just feel better than others. It’s not a mood thing– it’s a real difference in my ability to get on and think straight, plan and do things.”
“I know that lots of people feel better in the summer, but I really do get the sense that I function better when the sun is shining!”
“What I find confusing is that things can change in the moment. I can have tied and fastened one shoe up without any difficulty at all, then struggle to repeat the same actions for the other foot. People think I am putting it on– but I’m not. ”
Examples of fluctuations in dementia include:
- feeling drowsy or not interested in taking part in activities
- staring into space or appearing to be ‘lost in a daydream’, in contrast to the usual state of alertness
- speech may become less easy to understand but return to ‘normal’ later
- difficulty following a conversation that would usually be possible to keep up with
- struggling more than usual with everyday activities such as tying shoelaces, getting dressed, making a drink or meal
- taking longer than usual to complete activities
Tips, strategies and adaptations for fluctuations
- Make sure there is no physical reason for the change in ability or awareness. Pain, feeling unwell, infection, feeling too hot or too cold, or being worried or anxious generally can all contribute to the way we function and behave.
- Once other causes have been ruled out, remember that fluctuations in abilities and wellbeing can be a symptom of dementia. People living with dementia do not choose to have these variations in abilities and have little or no control over them. They are not deliberate.
- Accept the times when things feel slower or more difficult and allow for them. Rather than rushing to try and make up for moments that are slower than normal, accept that things will take longer in this moment. Change the plan, where possible, rather than rushing or putting additional pressure on getting things done to meet unnecessary or imposed deadlines (see RDS website page on matching tasks to abilities).
- Recognise the frustration for everyone concerned when fluctuations impact activities and plans. Try to accept the moments, work through them and in them as far as possible and try not to let frustration get a hold. Feeling frustrated and irritated is likely to add to the difficulties, not ease them (see RDS website page on adapting emotionally).
- Make provision in advance for days when fluctuations occur. For example, be prepared to cancel appointments on ‘difficult days’ or to reduce the number of activities scheduled for that day/week etc. Divert energy towards activities which are helpful, relaxing, uplifting and calming and which do not require additional effort, for example, listening to music, taking a bath, or enjoying the garden (see the RDS website page on engagement for further information).
- Make a list of these type of activities to refer to on days when they are needed. It can be hard to think of suitable activities in the moment. Having a list of activities that are comforting and ‘easy’ can be a helpful reminder for everyone involved (see the RDS website page on engagement for further information).
- Make a note of the times when symptoms feel worse than usual, and for how long they last. This can be helpful in identifying patterns and triggers. Seeing a record of when fluctuations come and go, can be reassuring whilst in the midst of a slower time, and can serve as an encouraging reminder that good days still happen. An ABC chart can be a helpful way of keeping a record.
People who can help
Many people living with dementia work out ways to adapt to and manage the symptoms that they live with. Conversations with other people who are living with a similar diagnosis often provide empowering and insightful hints, tips and suggestions, shared by those who understand the impact better than anyone. There are some aspects of symptom management which professionals can assist with in meaningful and ongoing ways and it is important to engage the services of professionals where possible.