End of Life & Dementia Care

1.1 Dementia is a progressive disease where an individual’s brain functions deteriorate and affects their mental capabilities. This disease is incurable which is similar to another terminal illness such as cancer. Symptoms of dementia will affect an individual’s memory leading to loss and confusing, language/ communication, understanding and judgement. Medication can be prescribed to help slow down the progression of symptoms. Within the more advanced stages the individual will commonly suffer from incontinence, limited mobility and limited communication usually the individual will not be able to use sentences just limited words.

Other symptoms that worsen similar to those with a terminal illness are: aspiration, difficulty with breathing, pressure sores from lack of mobility, unrecognisable symptoms of pain (may not be able to communicate) this could lead to the individual not being treated for pain.

1.2 The end of life experience may differentiate between those who have to dementia to those who individuals without. An individual may lack understanding surrounding the diagnosis being made, they may have had symptoms for a longer period of time before a diagnosis had been made.

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This can lead to confusion as to why they are having symptoms and the way they are feeling. An individual’s communication may be limited, so they may not be able to express their feelings, changes in symptoms and pain. This can lead to depression/ anxiety which impacts on the individual’s behaviour I.e. verbally aggressive, changes in appetite. Lack of communication regarding pain could impact on the quality of care and medical treatment, as care givers are the primary source of recognising an individual’s pain through sounds rather than speech and non verbal communication.

Whereas someone who doesn’t have dementia may be able understand a diagnosis and engage fully on how this can affect their health through an illness progressing.

1.3 Person centred care has come under Health and social care act which states “that people should make choices about their lives and they should be at the centre of all planning”. Is it important having the person at the centre of all care throughout the time of caring for someone and when end of life is approaching. The care provided to an individual within this should be based around their choices, beliefs, values and decisions which may have been made in advance. Working as a carer these should be respected. For example knowing the individual’s likes/ dislikes surrounding food, drinks, clothing, to have permission to give medication when the individual is unable to verbally consent.

1.4 In the earlier stages of dementia it is important that the carer works alongside and includes the individual and their family to make plans to reflect the individual’s wishes to be cared for at the end of life, before the dementia progresses and leaves the individual unable to communicate their wishes. Otherwise an appointed person would need to make decisions for the individual which could leave them feel distressed and unhappy. Planning and assessing allows time to plan for the care over the few days of life including after death. These advanced care plans reflect the individual’s values, beliefs and choices I.e. lifestyle, finances, medication, DNAR’s, funeral plans, after death care, appointed person for as/when the individual lacks capacity under the Mental health act to make “best interest” decisions on their behalf.

2.1 Pain in individuals with dementia is poorly recognised and undertreated can be due to lack of communication. This is dependent on what stage the individual is at within their dementia and how well the care givers know the individual. Some people maybe able to verbally communicate to carers if they are in pain by using single words and using non verbal methods I.e. pointing to what hurts but as this diseases progresses the individual’s ability to express themselves will worsen. If pain is going unrecognised, then there would be no medical intervention, which could cause more pain and will impact on the individual’s health and behaviours.

2.2 In the earlier stages individual’s may be able to express pain through verbal and non verbal communication, together the carer could recognise that they are in pain and a rough area of where this is coming from. This will enable carers to be able to provide medical intervention if needed I.e. Administering PRN paracetamol or seeking medical attention from a nurse/doctor when required. Care givers should use clear questions when speaking to someone with dementia as it may take them a little longer to process what is being asked. As the dementia progresses the individual could be unable to communicate, but they may be able to express pain through noise I.e. screams, but these could be easily misinterpreted by care providers as a “normal” behaviour if these are regular occurrences.

2.3 When pain has been recognised by care providers, communication with the individual is important where possible dependant of their ability to be verbal and how much capacity the individual has to understand their pain. Care givers will continuously monitor and observe the individual for changes in needs and record these within the daily care notes within the care plan. Dependant on the type of pain will depend on what medical intervention will be best for the individual through advice from other health professionals.

Health professionals offer support to care providers to work as a multi-disciplinary team to promote the well-being of the individual to observe, monitor symptoms as well as the care staff. Care staff can give over the counter medications as per care plan, or the doctor/ nurses can prescribe stronger pain relief and controlled drugs. As end of life gets nearer palliative nurse would be visiting to monitor the individual and advise staff on how best to care for the individual and what symptoms to look for in the last few days of life I.e. changes in skin colour, increase of secretions. Medications maybe increased I.e. syringe drivers, which will help ease the pain and to make the individual more comfortable.

Advice from colleagues and other health professionals will support care givers about non medicated techniques, these can be how best to position the individual, how often they should be repositioned to prevent pressure sores, skin care – keep the skin clear of sores, trying to keep the mouth clean as there would be increased secretions from the mouth, advice on fluid intake, methods how to try and encourage fluid intake i.e. spooning drinks, changes in food I.e soft. The individual should have an advanced care plan which care givers would be using to meet the individuals needs and wishes for example if they have a DNAR in place, then CPR would not be given.

3.1 Carers may feel guilt and stress and the end of life of an individual with dementia because they may have felt negative emotions towards the individual throughout the stages of dementia. At diagnosis the carer may not have accepted the diagnosis and treated the individual normally which could have caused frustration between the individual/ carer or they could have been in denial of the diagnosis and treated the individual “normally”, so the needs of the individual may not have been met fully. This could of impacted on the behaviour of the individual to become agitated or withdrawn if they feel they are a burden.

The carer may not fully understand the symptoms of dementia especially challenging behaviour I.e. shouting out/ aggression. The carer may have felt negative emotions such as embarrassment and may have lost their temper or felt like hurting the individual and they are frustrated with the constant needs of support the individual has. When dementia has progressed and the carer may have been stressed from taking on the responsibility of caring if they have not had regular breaks. But on the other hand the carer may feel guilty for taking breaks and leaving them for other services to look after them. The carer may have had to make difficult decisions regarding accommodation for the individual such as going into residential care as they feel they can no longer cope with the responsibility of looking after them. After death the carer may feel they have let the individual down and not cared for them well enough based on their own expectations of themselves, they may also regret certain decisions I.e. residential care.

3.2 Carers can be supported by other professionals to understand how the end of life process may differ for individuals with dementia. Any health professional involved with the individual’s care can provide support and advice I.e. GP’s, nurses, palliative nurses and social workers. They can also suggest informative services offered to carers as support where they can go and discuss the process with trained professionals and other carers. Communication between family, carers, health professionals is vital with end of life care as this can provide reassurance that the individual is being cared for is comfortable as possible, also to keep informed of any changes in the individual’s health I.e. refusal/ lack of ability to drink.

A family member may have been chosen to be the individual’s power of attorney in the advanced care plan once capacity has been lost. This would have been documented under the Mental Health Act. This chosen person would need to be involved in decisions alongside doctors. All the people involved with the care of the individual will support each other, answer any questions, and work alongside any advanced plans which should have been put in place. As towards end of life the individual won’t be able to make their own decisions so someone else will have to do this in the best interest of the individual.

3.3 Anyone supporting an individual with dementia will feel loss and grief at the end of his or her life. Some people may experience loss and grief at the time of diagnosis or once the dementia has progressed further as there will be a lack of recognition between family and the individual as they may feel the dementia has taken over. People may feel all different kinds of emotions through loss and grief. Some may have accepted the diagnosis/ changes of the individual and feel sadness. Others may find this a relief that the individual has passed and no longer having to carry on with progressing symptoms causing them pain and a poor quality of life.

3.4 Carers can have support from health professionals to make decisions and some of these decisions have to be made with health professionals, for example for a Do Not Attempt Resuscitation decision has to be made by a GP has to sign this document off in order to meet their best interests. Other decisions may need to be made if an advanced plan hasn’t been made such as where the individual will reside at home or within a residential placement.

3.5 At the final stages of end of life it is important to have good communication between all relevant parties (carers, family and colleagues). This is important so relatives are kept informed about how the individual’s health is, any changes in medications as towards end of life as it is common to be prescribed a higher dosage of pain relief I.e. morphine syringe drivers, as changes as in the final stages changes can happen quickly. Relatives may also want to know about the individual’s health as they may want to visit to say their last words or even be present at the time of death. Good communication is also important between carers as in residential placements there will be staff change overs which they will need to know the individuals health state, information about medication, to read end of life care plans, if anyone relatives need calling, any other info I.e. visits from nurses/ GP’s.