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Living with dementia – a carer’s journey:
10. Sleep apnoea – CPAP therapy

Stuart had moderate to severe sleep apnoea for more than 10 years. He wore a Continuous Positive Airway Pressure (CPAP) mask every night for eight years prior to being in residential aged care.

When he first went into care in June 2021, he slept poorly and didn’t even stay in bed some nights. He wandered, or sat in the TV room all night, despite the efforts of staff. It was impossible for him to wear the CPAP mask.

It was very challenging to adjust his sleep patterns but with the use of melatonin, they improved.

Stuart slept without CPAP for more than 12 months. By October 2022, I noticed that he was extremely lethargic. Some days it was difficult to keep him awake for meals. I raised my concerns with the GP. After we eliminated other possible causes, I decided to try CPAP again.

To my biggest surprise, Stuart tolerated the mask very well on the first night. He was less sleepy the next day. Subsequently he wore it every night and his daytime alertness improved. I was so relieved to find the cause of his drowsiness.

In the first few weeks after restarting CPAP therapy, the AHI (Apnoea-Hypopnea Index) was very high, some nights exceeding 40. I went to see the apnoea service to analyse the data and found that high AHIs were positional, which indicated that Stuart was sleeping on his back and obstructing his airway.

To keep Stuart sleeping on his side, I tried tucking two pillows under one side. This was a great success; the AHI dropped from 44 to 4. I started to document the CPAP performance in a spreadsheet and submitted a monthly report to the facility’s clinical team. The respiratory specialist commended me that I could work in a sleep disorder unit.

Stuart’s improved quality of sleep was obvious. He was no longer drowsy during the day, he interacted with me and staff, he was more responsive. In November 2022, staff already commented on these drastic changes. It was so rewarding to see and hear!

The challenge was to manage Stuart’s behaviours when he removed the mask. I applied the mask every night to ensure that he was settled before I left. He sometimes removed it during the night and got agitated when the night care staff tried to re-apply it. I repeatedly told staff to approach him when he was sleepy. They still had difficulties, so I offered that they contact me on nights when they had multiple unsuccessful attempts.

From November 2022 to November 2023, staff contacted me overnight once or twice each month. I took every opportunity to demonstrate how to approach Stuart when re-applying the mask. After 12 months, staff finally started managing without contacting me.

Since late 2023, I asked the RNs to send me daily sleep reports from the CPAP machine so I could monitor the performance of the mask seal and headgear and make adjustments accordingly. When I saw frequent mask leakage in the sleep report, I would adjust the strap or replace the mask when needed. I was very grateful to the RNs.

This was effective teamwork and a great achievement for all involved. I believe that with my patience, persistence and mentoring, staff transitioned from no knowledge and experience whatsoever about CPAP to confidence and competence.

Sleep apnoea is very common. Improved skill with CPAP can make a valuable impact on the quality of life of residents in aged care as well as on the work of care staff.

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Throughout 2024 Alicia is sharing her experiences to support and empower carers and their loved ones. She welcomes your feedback on this column – please comment on Facebook, Instagram or X or email editor@ssh.com.au.

Read part 9: Residential care (part three)
Read part 11: End of journey

 

 

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