Tips to support people living with dementia experiencing Sundown Syndrome

As we glide past the longest day of the year, the nights will rapidly start to draw in. Caring for someone living with a dementia may be familiar with the phenomenon of Sundown Syndrome.

As evening approaches and the light changes some people living with dementia can become agitated, distressed and may behave in an unpredictable way.

The umbrella term “dementia” describes a disease that is characterised by progressive degeneration of nerve cells within the brain affecting the individual’s ability to effectively communicate their needs and wishes. Sundown Syndrome is most commonly experienced by up to 45% of people living with dementia as they transition into the middle stage of their dementia. At this stage the person may still have some level of insight surrounding their behaviour and its effects on others which can cause more fear and anxiety. The exact causes of Sundown Syndrome aren’t entirely clear, however, recognising that all behaviours are a form of communication can help us to understand and support the person and minimise their distress.

Supporting someone experiencing Sundown Syndrome can be difficult so here are some tips:

1. Understand the person and their life journey

Late afternoon/early evening is a particular transition time of day for many of us, we often switch from being at work to coming home, our roles and responsibilities change. Reflecting back to the time before the person was living with dementia try to establish what their normal routine was and try to replicate this. These memories are deeply embedded, and whilst the person may look their current age they may now be living in a different reality unaware of the passage of time as their memories have been progressively lost. We need to cross the bridge into their reality and accept this is the nature of their memory loss, trying to pull the person back into our reality will only cause further distress and may provoke distress or anger.

2. Keep the person in control of their day and meaningfully occupied

Whilst it can seem frustrating to have the person constantly repeating questions or following you around, the truth is you may be the one constant in their life, the person they can trust when nothing else makes sense. So whilst it may help you to manage your day it increases the risks of distress and agitation if you let the person sleep for long periods during the day. Caring for someone living with dementia takes increasing amounts of time. Keeping the person as independent and in control of their lives, doing things they would “normally” have done (at a level and pace they can now cognitively manage) will help.

3. Minimise the impact of changes in light by keeping the environment well lit

This can reduce the effect of shadows forming as the evening draws in which can be misinterpreted by the person living with dementia. The additional light also gives the sense of it still being daytime, however, your normal routines will continue to reinforce the time of day.

4. Regular exercise and access to the outdoors is essential

Link going outdoors to their previous routines at home and work. Feeling imprisoned often makes the experience of Sundown Syndrome worse.

5. Sensory calming and sensory stimulation

Create opportunities for “brain work” by seeking advice for projects or playing games and quizzes in the early evening. As the evening progresses create a relaxing, calm atmosphere and environment establishing routines that enable the person to relax and wind down. The use of alternative therapies in the early evening can often help (reflexology, Reiki massage, back, neck and shoulder massage) as can reading a book or poetry together. If the person always locked up at night or had a routine of taking the dog out or putting them out before bed this may need to be re-enacted (even without a pet).

6. Getting support

Whilst the GP may well be an excellent support most people experiencing Sundown Syndrome do not respond well to medication it really should only be used as a last resort. Dementia UK and the local Admiral Nursing service will be able to offer further support and practical tips.

The impact of caring for someone experiencing Sundown Syndrome can lead to increasing fatigue and frustration. Joining a local carers group where experiences and tips can be shared often helps. A care home that specialises in the care for people living with dementia is equipped to handle their experiences including Sundown Syndrome and could provide the care and support needed.