4.4 Rest well

Living with dementia, and supporting someone who has dementia, can be mentally and emotionally tiring. Even everyday activities like having lunch with friends, making dinner or attending an appointment can take more energy than they used to. Planning your day through building in regular rest breaks as well as limiting the number of activities in a day can help protect concentration, mood, and overall wellbeing.

• Take short breaks between activities to recharge. Choose something that recharges your ‘batteries’. This could be a cup of tea with your feet up or a short walk outside.
• Avoid packing too much into one day and include regular ‘rest days’.
• Be aware and alert to the signs of fatigue (e.g., irritability, zoning out), and pause before exhaustion sets in.

Leon found rushing home from work to his wife Hanna, to prepare dinner, help the kids with homework and get some housework done was wearing him down. He was sleeping poorly and worryingly, making mistakes at work. Leon received counselling from Dementia Australia. At a family meeting, the family brainstormed how to share the at home more fairly. The counsellor helped Leon make arrangements for private home help to prepare family dinners. Leon found that he now had time after getting home to spend time with Hanna and the kids. He said it made an enormous difference to this stress levels.

Changes to sleep cycles are common in dementia

Disruption of the usual 24-hour sleep wake cycle, called the circadian rhythm, is common in people with young-onset dementia. Changes in sleep and rest might include fragmented sleep at night, napping more often during the day or becoming very active at night. This is caused by damage to the brain’s internal ‘clock’, but is also influenced by factors in the environment, such as temperature, bright light or noise at night or pain. There are strategies that can help both you the carer and the person living with dementia:

• Go to bed and wake up at consistent times each day
• Have a calming wind-down routine for the 30 minutes before bed (mindfulness apps like Smiling Mind or Insight Timer, or gentle music can help).
• Prioritise sleep over other tasks, remember sleep and rest is part of self-care.
• If you nap during the day, make them short (20-30 minutes) and avoid napping late in the day.
• Keep the sleep environment comfortable, with a supportive mattress, the right room temperature, low light levels and minimise any noise.
• Avoid caffeine from mid-afternoon and minimise screens (electronic tablets, phones or laptops) before bed.
• Stay active during the day and spend time in morning sunlight.
• Try not to drink too much right before bed to reduce nighttime bathroom trips.

When the person with dementia’s sleep disruption affects the quality of your sleep

Your sleep matters! Having your sleep disturbed over time needs intervention. Talk to your GP, the person with dementia’s specialist, and/or contact Dementia Support Australia (DSA) to help you develop personalised strategies if the person with dementia is active at night, interruption your sleep. You may find a sleep observation form that charts wakefulness and sleep of the person with dementia over the 24 hour period a helpful tool to understand patterns of sleep. Use these observations to base discussions on sleep with your GP or DSA consultant.

Sleep disorders to be aware of:

• Restless legs syndrome, more common in Lewy Body disease —an uncomfortable urge to move their legs at night, interrupting sleep.
• Acting out dreams – again more common in Lewy Body disease. This may mean more movement and may include running movement, even kicking or hitting.
• Nighttime eating, more common in frontotemporal dementia.
• Sleep apnoea, where breathing briefly stops at night, often with loud snoring or sudden waking.
• Pain can be a significant factor in causing sleep disruption. Ensure you explore this possibility with the GP.

If you notice significant sleep changes, loud snoring, pauses in breathing, or persistent tiredness, check in with your doctor. They may recommend a sleep assessment or referral to a sleep specialist to explore treatment options.

Photo: Sincerely Media via Unsplash.