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Sleep and the night-time lives of people with dementia

Key learning points:

  • The importance of good quality sleep in older people with dementia
  • Considering the night-time lives and requirements of this group
  • How primary care and community nurses can support patients and families

One of the areas of care that often is forgotten in respect of those with dementia is how cognitive impairment and the features of the condition interfere with how a person achieves a good night's sleep. The features of dementia will often have a significantly negative impact for both the person with dementia and their family/carers, and will invariably cause difficulty, worry and affect peace of mind and a person's positive attitude.

Sleep is a behaviour that we assume will most often look after itself and be part of normal everyday life. However although we spend around a third of our lives sleeping, sleep disturbance in the general population is extremely common.

A good night's sleep is often felt to be typically seven to nine hours, although as we get older it is common that our need for sleep reduces and elderly people will also often experience more awakenings during the night.

There are currently thought to be over 670,000 people living with dementia in the UK1 and it is estimated that a further 400,000 are undiagnosed. The work of community nurses is seeing a greater focus on gaining knowledge, skills and understanding concerning people with dementia. The recent work carried out at the Department of Health (DH) linked to the '6Cs' campaign2,3 addressing nurses in all settings dealing with people with the condition has produced a useful framework to support increased competence and capability in working directly with dementia patients, their families and carers. It also highlights the role nurses have in residential care settings.

Sleep is essential for life, and we spend approximately a third of our lives asleep. Around one in three of us have regular, if not ongoing, sleep difficulties including insomnia, interrupted and disrupted sleep.4

The Great British Sleep Survey of almost 7,000 randomly selected participants covering a wide range of ages and genders showed that 38% described themselves as having good sleep and 36% experienced chronic poor sleep. The remainder had variable sleep patterns depending on circumstances and changeable conditions.5

Sleep patterns vary depending on a range of factors. These can include:

  • Lifelong sleep habits.
  • Environmental circumstances - heating, surroundings, external noise or other distractions.
  • Diurnal variation - older people may have short naps during the day.
  • Fluctuating circadian rhythms due to the ageing process- most older people tend to need less sleep.
  • A change in lifestyle such as enforced inactivity can cause lethargy and sleep disruption.
  • The presence of any health difficulty, such as pain or a long-term condition symptom breakthrough. (It should be remembered that although many people, particularly older people, will most likely be taking medications to control symptoms, and the overnight period will be an extended period of time without any medication).
  • Whether linked to alcohol or other substances misuse - there is evidence that a hidden problem to many older people is a long term reliance on alcohol taken at levels above what are now recommended as safe limits.

There are several million prescriptions of hypnotics each year and a large number of older people have become dependent upon a night-time sedative or sleeping tablet to enable them to get a good night's sleep. In 2010 in England, there were 2.8 million prescriptions dispensed for Temazepam and almost 5.3 million for the common sleeping pill Zopiclone. There were also more than 725,000 prescriptions dispensed for Zolpidem and more than 9,400 for Zaleplon, two other drugs in this same family.

It is less common nowadays to see someone after a period of hospital care returning home with a sleeping tablet, but this does still take place and causes difficulties in terms of medication dependency and withdrawal management, as well as other associated risks. The disruption and impact of any hospital admission for older people will most often leave lasting problems post discharge, especially for those over 80. We know there is a high prevalence of cognitive impairment, with evidence suggesting up to one in five people in the age group will be experiencing life-affecting signs and features of confusion. Sleep is essential to life and has key elements in how we live well.

Sleep and Dementia

It is well known that dementia has a whole-system impact on activities of everyday life and the nature of the degenerative, progressive irreversible condition will include a probable effect on sleep. Those with advancing features of dementia will almost certainly be in receipt of personal care support, sometimes from external agencies offering care packages (most often from partners, families and carers) and/or residential care. The nature of this more intensive care and support will invariably at some point require regular night-time assistance for personal care, observation and risk assessment and management. While we regard this need as very necessary, of course this type of support will, for many, disrupt sleep - for example when carers are required to carry out night-time checks during the night.

Most people with dementia are living at home many with the support of a primary carer, commonly a spouse. The need for a robust support plan for the couple will often come down to the primary care team, supported by social care. Care packages can be put in place to enable retained and sustainable independence, however there is a growing realisation that incidents 'out-of-hours' carry increased risk of preventable admission to hospital commonly after, for example, a fall in the night for the person with dementia.

Data suggests that the overnight period is a particularly important time to consider for the person with dementia. Recent data from NHS England shows the number of emergency admissions for people to acute care A&E departments is increasing. The period between April and June 2013 saw almost 163,000 emergency admissions of people with dementia, with the suggestion that this number could be much greater during seasonally high demand periods such as during the winter months.6 Anecdotally, admission rates for this group are proportionately higher in the night.

In terms of addressing some of the night-time risk factors, Box 2 offers a simple checklist to consider when assessing risk and supporting a person or couple living independently at home in how to minimise the risk of an avoidable admission to hospital.

Wider considerations regarding night time lives

Most of us have certain preferences about how we like to spend our nights once we have retired to sleep. Some of us like a light on, some may like a radio playing faintly. Whether we have one or two pillows or perhaps familiar elevation of our bed perhaps may have a bearing on how well we sleep. Seasonal changes might include a wish to replace bed covers from a lower to higher tog rated duvet, or add blankets or heated hot water bottles, which in themselves create risk and need to be carefully considered if used by the person with dementia. The positioning of a bed and its proximity to windows, doors and certainly access to a toilet will also be relevant. Using the toilet in the night is a very common behaviour and not just associated with a change in bladder elasticity or prostate enlargement. Sometimes these variations can be changed out of choice, although mostly our habits at night will be entrenched.

Should an older person with dementia, even in its milder early onset form, need a hospital admission or require any other type of short or long-term residential care, it is highly likely to cause difficulty with night-time routines. The probable disorientation and loss of familiarity of surroundings can lead to significant disruption and further risk of, for example, falling in the night, having an interrupted sleep or problems with continence and subsequent upset, embarrassment and distress.

Person-centred care and sleep  

The person-centred care movement aims to ensure that the wants and needs of a person with dementia are fully reflected in care given.  Person-centredness in terms of the night-time life of someone living with dementia can often be overlooked. In Devon, work is being carried out on developing a dementia 'quality kite mark' for care, with a key element being care providers conducting peer reviews in one another's residential setting. Night-time lives are one of the themes being reviewed using an evidence-based template derived from the 'Progress for Providers' guidance,7 to ensure best practice and a consistently high standard in meeting a person's needs.

Evidence and current thinking

In terms of direct evidence-based considerations and models of care relating to people with dementia and sleep, there is little written. However a number of studies have offered some useful further explorations for an area worthy of investigation and research.

Salami et al. reviewed 38 studies in 2011 looking at sleep disorders and Alzheimer's disease and concluded that all focused treatments were ineffective.8 This leaves a clear implication of further work needed to help address an area crucial to the health and wellbeing of a person living with dementia.      
   
Discussion

We all take for granted sleep as a basic but assumed aspect of life until we experience sleep difficulties. People with dementia may sleep differently to how they have slept during the most part of their lives due to the changing nature of the way the condition affects them. Those in residential care, accounting for two thirds of those with dementia in the general population, will most often have interruptions in the night during night checking rounds carried out by care staff. The need for close observation and attention in the night to personal care needs will often mean disruption for even the most solid sleeper. The inevitable outcome will most often be difficult or challenging behaviour during the day.  

The community and primary care nurse will need both adequate levels of detection and assessment skills in picking up early and progressing signs and features of cognitive impairment, as well as good capability in including a checklist in thinking about night-time issues and risks.

There is still much stigma concerning someone presenting with memory problems or muddled and confused thoughts. Families, and particularly spouses, can feel caught in not knowing what to do for the best when helping treatment-resistant partner. Like with so many debilitating late-onset conditions, dementia is a disease that many people will shy away from seeking help for, waiting until an often catastrophic event, incident or accident brings them to the attention of services. For some this can be too late, after a lengthy period of struggle and suffering.  Both in terms of night-time issues as much as the wider context of dementia care and treatment, the nurse role is crucial in responding to even mild early signs in enabling the person to receive help and support.  

Recommendations, conclusion and next steps

The role of community and primary care nurses will already be seeing a need to develop key skills, knowledge and competencies in dealing with a growing number of older people with cognitive impairment and dementia. This article is intended to 'plant a seed' of interest with a view to encouraging nurses to explore sleep and the night time lives of older people they are in contact with on caseloads and in consultations. The increased demographic of dementia in older people, combined with the national imperative to better reach people with the condition in a context of under-detection and diagnosis, puts community nurses in the frontline to be the first contact for a person.

The thought and consideration we have in terms of our own preferred habits and patterns in how we live our lives at night should be given the same level of concern when applied to people living with dementia. The term 'living well with dementia' was the headline in the National Dementia Strategy produced by the DH in 2009. How people live with dementia at night is an important element of a happy and healthy life.

Next steps should be as follows:

  • Review all older people on current caseloads or in regular contact for consultations and ask about night time habits, safe behaviours and any areas of worry or need in the night - particularly for those over 80 and those with known cognitive impairment.
  • 
Seek out peer group discussion on the subject of the themes raised in this article.
  • Take a special interest in sleep management across all aspects of care and support offered to patients.

References

1.    NHS England.'Dementia Prevalence Calculator. 2013.
2.    DH. Making a Difference in Dementia - a nursing vision and strategy. 2013.
3.    DH. '6 Cs - Compassion in Practice'. 2012.
4.    Mental Health Foundation. Sleep Matters. 2011.
5.    Espie C, et al. The Great British Sleep Survey. 2012.
6.    NHS England. Dementia Assessment and Referral Data. 2013.
7.    Adams T, Routledge M, Sanderson H. Progress for Providers. 2012.
8.    Salami O, et al. Sleep Disturbance in Alzheimer's Disease. International Journal of Geriatric Psychiatry 2011;26(8):771-82.