Supporting residents in care homes; help for carers

Key messages about dementia in care homes in relation to COVID-19

• Many people with dementia live in care homes.
• Three quarters of residents of care homes have dementia.
• People with dementia may not fully understand the significance of, and need for, isolation.
• A carer wearing full personal protective equipment (PPE) could be frightening to a person with dementia (for example, a mask could even bring back negative images of wartime).
• Communication may be a challenge and clinicians may have to rely on the signs rather than symptoms of COVID-19.
• Delirium is much more common in people with dementia – it can be distressing and cause challenging behaviour.

Carers should look for signs rather than the symptoms of COVID-19. Signs are things that doctors and clinicians observe; symptoms are things people complain of, such as a headache.

Practice example: Mrs Patel

Mrs Patel is aged 83, has had Alzheimer’s disease for four years and has been in her current home for 18 months. She has diabetes and heart failure and is quite frail. She used to be visited by her husband every day, but that stopped when residents in the home developed COVID-19. Mr Patel notices during a Skype call (which their granddaughter organised), that his wife is not her usual self – she is agitated and easily distracted. She has no complaints, is sleeping well but is off her food and has had some diarrhoea. The care staff wonder whether a mild sedative would help. When a care worker checks her temperature, she finds it is 38.6°.

Confusion is common in older people. The medical term ‘delirium’ describes episodes of confusion which are caused by a physical illness such as a chest infection or urinary tract infection.

People with dementia are 30 times more likely to become confused.

Practice example: Mr Wang

Mr Wang is 73 and was recently admitted to his care home, because his wife and family feel they are unable to care for him at home and need some additional support. He has had Alzheimer’s disease for five years. He settled into the home fairly well and saw his family regularly through window visits due to COVID-19 visiting restrictions. Mr Wang has made friends with another Chinese gentleman in the home who is on the same unit and enjoys spending time sitting in the day room with him.

One morning, his carer notices that Mr Wang is particularly tired, which isn’t surprising as the night staff reported that Mr Wang was up for three hours the night before, pacing around the home. He was gathering up items of clothing and laundry which were being organised by one of the carers.

The staff ask the family about his obsession with clothes. The family say he owned three dry cleaning shops and had worked in the garment business all his life. The care staff distract Mr Wang by asking him to help to organise the linen and bedsheets in the home.

A personalised care plan to manage behavioural disturbances is important for people with dementia. Often, a person-centred approach can help diffuse such behavioural disturbances. Alternatives to drugs should be tried before prescribing medication.

Practice example: Mr Smith

Mr Smith is 69, has frontal dementia and has been in his current care home for a year, as his partner could not meet his needs at home.  Mr Smith does not appreciate that there is a problem. He does not understand why he cannot go out as he always did. He becomes agitated when he tries to leave the home and is told by staff that he has to stay. Mr Smiyh has never been aggressive but has raised his fists to staff when they stop him opening the front door.  He was in hospital recently with a chest infection and tested positive for COVID-19.

The care home contact the GP and ask her to prescribe an antipsychotic to control his behaviour. The home receive advice from the local community mental health team. As part of the discussion with Mr Smith’s partner, the home agreed that he can now come and see Mr Smith using their visiting pod.

Through conversations with his partner on the phone and in person, Mr Smith begins to understand the need for isolation, which is why the front door of the home is locked. The staff put visual images on the front door to remind Mr Smith not to go out. He becomes less distressed and does not need antipsychotic medication.

Care at the end of life should be personalised. The symptoms of someone with dementia dying are the same as for individuals without dementia. A bespoke care plan allowed Mr Jones to be able to be with his wife when she died. Advance care plans can indicate a person’s wishes at the end of their life.

Practice example: Mrs Jones

Mrs Jones is 87, has mixed Alzheimer’s disease and vascular dementia. She has been in her current home for five years. She is recognised as being in the last days of her life and has an advance care plan, which states she does not want cardiopulmonary resuscitation. Mrs Jones has symptoms of COVID-19, and care staff are awaiting her test results. She has difficulty breathing and seems distressed. Mr Jones, who has been married to his wife for 68 years. Her husband is 89, quite well and, until the coronavirus outbreak, was visiting her every day. He has been supported by the Alzheimer’s Society and is in regular contact with his dementia advisor.

Mrs Jones has been placed on an end of life care pathway and has been prescribed hyoscine and morphine sulphate. Mr Jones has been provided with PPE and so is able to sit with his wife during the last hours of her life. He was holding her hand when she died.