RCC 6 – Sleep Matters – A service for people with dementia and their carers’ affected by sleep disturbance
Proposer: Jacqui Wood – Sleep Matters CIC
Funding allocated: £8175.00
The proposal:
Sleep disturbance is the most significant factor in the decision to change a loved one‘s care package. Most people with dementia suffer some form of sleep deprivation and this can have an impact on the carer and is often cited as the reason for carer burnout. There is only currently one way for sleep disturbance to be managed and this is by the prescribing of psychotropic medications.
The sleep matters project was piloted in North East Lincolnshire, delivered by trained volunteers, to test out whether non pharmacological techniques can improve sleep for the carer and the client.
What the money was spent on
Volunteer recruitment (estimate)
200
Rickterscale training
1,000
Sleep practitioner training
1,000
Volunteer ‘pay as you go’ dedicated mobile phones
175
Equipment/materials including light boxes
600
Extra resource to be bought in – 10 hrs/week over 8 months
4,800
Volunteer travel expenses
400
TOTAL
8,175
What the project achieved
The pilot had 5 volunteers and each volunteer has up to four clients that they work with. The programme consists of 3 visits to the clients’ house:
1. To set a baseline, establish current sleeping patterns and see the bedroom.
2. To discuss sleep options with the client and carer
3. To review progress and evaluate interventions.
The hypothesis tested was to reduce the reliance on drugs to get better sleep
The pilot was slow to start and didn’t get the promised support from the nominated practice which created delays for the community group delivering the pilot. The results from the pilot of 17 people show.
The pilot team has branched out to working with Navigo staff in order to train them in working with people with dementia.
Update on 2016
A second pilot was planned to establish if the effects are consistent with a larger group and the NEL Clinical Commissioning Group and other local partners were approached for funding to extend the pilot. The funding was not found so the delivery partners to the RCC took the idea to Salford Health and Wellbeing Board who picked up the idea of the pilot and funded the extension to the pilot using the NEL ideas and learning and support from Jacqui Wood. The SHWBB provided £18,000 and the Unique Improvements programme added in £9000 in kind and using a rigorous measurement process including a Rickter Scale © the following results were established:
15% Improvements in Home life
19% Improvement in Sleep
14% Improvement in diet
19% Improvement in managing time
25% Reduction in isolation
24% Reduction in stress
11% Improvements in emotional signs / managing the emotional symptoms of stress
13% Increased happiness in perceived state of health
10% Improvement in the ability to communicate thoughts and feelings with others
33% Reduction in ‘closeness to limit’1 felt. This is particularly important as it relates to how close the relative is to a point that they feel they can no longer continue with their caring responsibilities and may seek alternative caring provisions. A lack of sleep and being unable to cope are the main reasons people cite for admitting the relatives to residential care.
1 Closeness to limit is a subjective measure which relates to how the carer feels able to cope on the day.
What is interesting is that this pilot identified ‘closeness to the edge’ as a factor which if this can be reduced families may delay transferring care into the residential care sector. This measurement of the pilot also identified the isolation felt by carers who are currently not known to services and an unplanned output from the pilot was a need to signpost to other community services for support.
The clients who’ve followed programme feel more in control of their lives – risk falls generated health
The Change Champions Group I was working with and sharing ideas and seeing what goes on in other difficult areas was an eye opener. However, it was encouraging – passion is contagious. Goal setting helped stay focused.
The NEL Sleep Matters project has successfully drawn in small pots of funding from Navigo – for staff training & Lincolnshire Dementia Support Network. This extension has allowed reach into new communities and networks and enabled work with Navigo and a Youth Church Group.
Sustainability
Because the pilot was not picked up locally the team diversified into providing a basic training package for sale which enables more reach into wider communities. Since the completion of the Salford Sleep Matters which went on to gain additional funding from the SHWBB, the evidence from the two pilots has been represented to the NEL CCG who are supporting a local bid to Health and Wellbeing Board for a Sleep Matters Project led by Foresight in conjunction with Sleep Matters CIC the value of which is £50,000 total budget.
A Sleep Matters CIC has been formed and has a website and one of the volunteers now gets paid which has created economic activity for two people.
It hasn’t all been easy and there have been a number of challenges to overcome such as retention of volunteers and it has been difficult with clients dying. Internal referral route of using the GP practice was difficult so we had to overcome it by using other organisations for referral.
Being able to show the success to Navigo CEO convinced him to commission Sleep Matters training as the training in Change Champions showed how to demonstrate success.
The founder of the Sleep Matters CIC commented ‘The RCC programme was the trigger. If it hadn’t been for Change Champions I wouldn’t have been doing it (Sleep Matters). Because of Change Champions I was able to see a way to do it.’ I fear for the future as it is difficult to get the Sleep Matters message across to the rest of the system.
For the future I would like to tap into Direct Payments and Personal Budgets to pay for the Sleep Matters service. If the service stopped there would be no intense support. So far we have trained 75 staff members in Navigo. There isn’t another service like it for this client group.
Case Study
Jean lives alone and has been diagnosed with MCI (mild cognitive impairment), which can precede dementia later.
The sleep problems identified, following assessment.
Jean would sit down to watch the TV after tea at around 6pm. Within a very short time she would fall asleep, so decided it would be best to actually go to bed.
Having been in bed since around 6pm, Jean would then wake up a couple of hours later, and then continue disrupted sleep throughout the night.
She would normally read for most of the night, getting up from time to time for a cup of tea.
Jean often worried about various situations happening within her family and that also affected her ability to sleep.
She tried prescribed sleeping tablets, but that left her feeling confused and distant the next day, so she decided to ‘put up’ with the sleep problem.
The sleep programme designed for Jean
Record your favourite TV programmes and watch them through the day and do other activities in the evening such as sewing, reading, tidying up etc.
If still wanting to watch TV after tea, do something whilst watching, such as ironing.
Try to delay bedtime incrementally; retiring a little later each night until you go to bed regularly at 10pm rather than 6pm.
Have a warm bath or shower and get into a cold bed (this helps to induce sleep).
Keep a notebook by your bedside and when negative thoughts interrupt your sleep, write them down so they are out of your head and onto the paper to deal with the next day.
Avoid getting up to have a cup of tea, unless you have been awake for more than 20minutes. Try to drink decaffeinated tea.
Improvements
Able to now go to bed at 10pm instead of 6pm
Getting a full 5 hours sleep before waking around 3am, but able to go back to sleep until sometimes as late as 8am
Feeling more relaxed and fresher than before
Duration of support – 20 days
A video has been made with Jean about her experience.