27 affected by it and their families are often not afforded holistic care towards the end of life . Few people with dementia die in their own homes , with most having moved into care homes .
NICE guidance on dementia recommends that , from diagnosis , people should be offered ‘ flexible , needs-based palliative care that takes into account how unpredictable dementia progression can be ’. 4 Palliative care can be given at any stage of an illness , with the aim of providing psychological , spiritual , emotional and social support , responsive symptom management and good quality of life . Despite this , people affected by dementia are not likely to receive comprehensive , holistic reviews of their needs throughout the course of their illness , which results in unmet needs , increased family carer distress and crisis-driven care . The European Association for Palliative Care definition of optimal palliative care in dementia includes : communication ; shared decision making ; setting care goals and advance planning ; continuity of care ; family care and involvement ; avoiding futile , burdensome treatments ; and timely recognition of dying . 5
Viewing dementia through a palliative lens is important in terms of offering equitable access to care , addressing unmet needs , reducing crises and maximising opportunities to make end-of-life priorities and conversations part of routine care . It is especially important to give people with dementia the opportunity to express their views , needs , preferences and wishes when they still have the capacity to do so .
An uncertain and unpredictable trajectory Dementia rarely walks alone and most people with dementia will have other comorbidities they are living with ( and may die from ). 6 Yet it is common for there to be ‘ diagnostic overshadowing ’ – an assumption that symptoms , including changes in behaviour , are due to the dementia rather than other factors such as pain , without further assessment or investigation . This may result in a missed chance to address palliative needs or to identify a move towards the end of life – an identification that in any case can be difficult , as advanced dementia can make the earlier stages of dying hard to spot . It is often assumed palliative care is only to be provided in the later stages of dementia , but people may live with the advanced stages of the illness for several years , or die before they reach that stage . This uncertainty and the complexity of the trajectory underpins the need for a palliative view right from diagnosis . In order to provide holistic care , comfort and quality of life , clinical practice should adopt a needsbased approach to end-of-life dementia care rather than defining it by the stage of disease . 7
There is a paucity of research into methods to aid recognition of a move towards the end of life in dementia . However , some tools may contribute to holistic assessment and care planning as part of routine care . These include : the Supportive and Palliative Care Indicator Tool ( SPICT ) to help recognise deteriorating health and unmet need , and consider plans for current and future care ; the Gold Standards Framework to improve proactive care ; and the Surprise Question , asking ‘ would you be surprised if this person died within the next year ?’ The Integrated Palliative Care Outcome Scale for Dementia ( IPOS-Dem ) was designed as a measure to be completed by staff in care homes to support the systematic assessment and monitoring of symptoms of people living with dementia , and this can also be used with people living with dementia in their own home ( see Useful resources , page 28 ).
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Being alert and having ‘ eyes open ’ to any change is key to enabling a good end-of-life experience . In the final three months of life , people with dementia will typically have at least three admissions to hospital . If admitted , they are at increased risk of poor outcomes during and following the admission , including being more likely to be discharged to a care home . 8
It is important to remember each person ’ s experience of dementia will be unique but some changes to look out for include :
• Delirium .
• Reduced function .
• Reduced communication .
• Becoming more withdrawn .
• Changes to eating or drinking .
• Problems with swallowing .
• Sleeping more .
Supporting patients and family carers to think and plan ahead A palliative approach also involves supporting the family of a person living with dementia to think about the future and plan care as far as possible in order to minimise crises . It is helpful for families to consider what would be useful for anyone involved in the care to know about the person and how this information could be shared . These considerations may include :
• If the person with dementia loses their ability to express their wishes and preferences , who would they like to be their voice ?
• What does a good quality of life mean to them and how can this be achieved and maintained ?
• Has the person or the family considered completing a life story or a ‘ This is Me ’ type document ? This will be useful in the event of admission to hospital or to a new care environment , or for care staff visiting the home .
• What does the person know about advance care planning ? Have they completed an advance statement of their wishes , values and preferences about their future care if they become too unwell to make or communicate those decisions ?
• If care needs are changing and transition to a care home could be the next step , have they thought about what care options will be available to them ?
Proxy decision making – where decisions are made on behalf of the person with dementia – can be particularly stressful for family carers , often compounded by the need to take crucial decisions at times of crisis . Families are also often living with a sense of loss , guilt and grief . It is therefore important to take advantage of any opportunities to help them feel more confident and informed about decisions they may face and what they need to consider .
Triggers to these conversations often occur at key transition points , such as :
• Following a diagnosis of a life-limiting illness like dementia , when the person asks about the future , death or dying .
• Following repeated hospital admissions , a change or deterioration in condition .
• If there are signs of unmet need .
• When the person is thought to be in the last year or so of life .
If the person with dementia has lost capacity to make a decision , such as a choice regarding a change in care setting , a best-interests decision-making process should be followed or , if a Lasting Power of Attorney is in place , referred to the attorney . 9