- There is considerable diversity of need for people affected by dementia
- Children, families and secondary carers need particular support
- Primary care nurses have a key role in ensuring access to support
Nearly half of the UK population know a close friend or family member with dementia.1 Nurses have an important role to play in helping all concerned2 but this diversity of need can be professionally challenging. For example, people with a learning disability are more likely to develop dementia than the general population and at a younger age; people with young onset dementia may still have dependent children; and people who are from the deaf community, or from black, Asian or other minority communities may face additional challenges in getting access to help.3,4 Although discussing these diverse needs in any depth is outside the remit of this paper, it will provide an overview of some fundamental issues we need to understand if we are to provide effective help and support for all people affected by dementia.
Dementia is a syndrome, that is, a set of common symptoms that feature in numerous different illnesses for example, Alzheimer’s disease, vascular dementia, Lewy Body dementia and Huntington’s disease. Each illness has a different underlying cause, typical pattern of progression and potential treatment. However, common to all is that it is a long term and life limiting condition and it has therefore been recommended that ‘…a palliative care approach be taken from diagnosis to death.’5
Dementia is often categorised in stages: early, middle and
late/end of life,6 and although these are rather artificial divisions they can help us to think about potentially different needs during its progression over time. Recognition of dementia in its early stages is important so that families can know what to expect and can make plans. For example, it enables them to access legal advice, set up advance directives, complete their last will and testament and draw up lasting powers of attorney; important transitional processes that help both emotionally and practically (see Table 1, R1). In the case of Alzheimer’s disease it may also ensure timely access to medication that can slow the progression of the illness.
Primary care is often the first point of contact when people develop dementia and primary care nurses can ensure people get access to an optimum package of care.7 Screening of the general population is not recommended5 but care needs to be taken not to confuse dementia with a treatable delirium.8 However, National Institute of Health and Care Excellence (NICE) and Social Care Institute for Excellence (SCIE)5 guidance states that clinical cognitive assessment in those with suspected dementia should include examination of attention and concentration, orientation, short and long-term memory, praxis, language and executive function using a standardised instrument (eg. mini mental state examination (MMSE), six-item cognitive impairment test (6-CIT), general practitioner assessment of cognition (GPCOG) or seven-minute screen assessment tools in primary care screening cognitive impairment (see Table 1, R2 and R3).
The Alzheimer’s society9 suggests that help should be sought without delay if you:
- Struggle to remember recent events, although you can easily recall things that happened in the past.
- Find it hard to follow conversations or programmes on TV.
- Forget the names of friends or everyday objects.
- Cannot recall things you have heard, seen or read.
- Notice that you repeat yourself or lose the thread of what you are saying.
- Have problems thinking and reasoning.
- Feel anxious, depressed or angry about your forgetfulness.
- Find that other people start to comment on your forgetfulness.
- Feel confused even when in a familiar environment.
Experience of dementia
It is tempting to think of dementia only as a medical condition, rather than the individualised and unique experience it for those people affected by it. Nurses need to understand the issues in a holistic way as it is often the consequences of symptoms for individuals that cause most distress. For example, no longer being able to recognise everyday objects such as a knife and fork will likely result in avoidance of eating in front of others and the subsequent problems of adequate nutrition, hydration and the risk of delirium. Feeling embarrassed when the right word can’t be found, forgetting names or being unable to work out which coin is which can all result in avoidance of social contact with the consequent isolation.
More recently attention has been given to the prevention of dementia related to lifestyle choices (see Table 1, R5). Prevention of vascular dementia can include treatment of hypertension that reduces the risk of transient ischaemic attacks that can lead to this type of dementia. Cognitive training interventions have also been found to affect the onset of dementia.10
Intervention and support
Simple alterations in communication style and awareness of common problems can maximise the potential for continued social contact and interaction with others. People newly diagnosed live independently for lengthy periods given effective support. Thinking about ‘support’ we can offer rather than ‘care’ can influence our attitudes; care narratives can interfere with seeing people as adults and equal citizens.11
The Alzheimer’s society’s dementia-friendly communities’ initiative focuses on everyday spaces such as busses, shops and leisure facilitates in an effort to make social and domestic lives easier.12 Access and easy negotiation around clinical environments is also important. Clinical areas can be audited using The King’s Fund13 environmental assessment tool, an easy to use tool enabling examination of the use of space, light, signage, flooring etc., from a dementia perspective. The lack of depth perception that can occur in dementia can result in regular falls when striped carpets appearing as steps or a step drop cannot be perceived. People may bump into walls, unable to assess the space around them. Contrasting toilet seats and doors and provision of picture signs can all help. Non-pharmacological approaches such as these are recommended, as inappropriate use of antipsychotic medication to control behaviour has been largely condemned as an abuse of human rights, only to be used as a last resort.14
In later stages of dementia when recent memories are less present than past, we may find ourselves in a dilemma, to help orientate a person to reality, or to ‘get into their world’ and validate their experience or feelings. The former can trigger a new grief reaction as if hearing of the death of their spouse for the first time. We can predict this reliving of grief and therefore be aware that reality orientation is not always the most helpful intervention. Admiral Nurses (Dementia UK), specialist nurses who work exclusively with families affected by dementia, can work collaboratively with other professionals to offer advice (see
Table 1, R4).
Other initiatives that can help people live well include: digging for dementia, singing for the brain, Alzheimer’s cafés and post-diagnosis support groups (easily found online). Book clubs (eg. @Dembkclub on Twitter) can meet intellectual needs which can be neglected due to our assumptions; the mental capacity act15 is clear that we should start from a position of assuming full capacity. Table 2 shows where families can find information and support.
Children and secondary carers
Supporting families is clearly part of the nursing role. Children of parents with young onset dementia can have a particularly difficult time and find themselves, without anyone noticing, in the role of young carer (see Table 1, R6). Adult children face their own challenges. If the spouse is the next of kin, such children will not have access to any information resulting in helplessness, isolation and distress. As one granddaughter has said:
“I cried, I cried and cried, alone in my room. I cried because it had taken a lot for me to go to the home, I cried because I was still trying to understand what dementia was, I cried because I was angry that no one was doing anything to help and I cried because I loved my granddad so much and it hurt so badly watching him forget more and more.”16
Cognitive reframing, a form of cognitive behavioural therapy has been found to have an effect on anxiety, depression and stress for carers.17
Each country within the UK has a different strategy for dementia, however all are similar and promote the early recognition of dementia. In England, the national strategy for dementia18 is to be refreshed. Nurses have a pivotal role in achieving national standards and primary care nurses are well placed to ensure dementia is recognised and support offered at an early stage.