Learning lessons from complaints about Alzheimer's disease

• Alzheimer's disease is more common in people over the age of 65 and the risk increases with age.
• Rates of dementia are increasing, according to NHS England, which has published 'Dementia programme and preparation for new Alzheimer's disease modifying treatments'.
• This notes that dementias (including those caused by Alzheimer's disease) are already the second biggest driver of mortality in England and are a significant reason for people to need NHS care.

MDU cases

A review of over 150 cases notified to the MDU and involving patients with a diagnosis of Alzheimer's disease over a recent five year period revealed a number of themes.

The most common reasons for members to seek MDU support in these cases were:

• an investigation by a coroner (or fatal accident inquiry in Scotland) - a significant number of these deaths followed the patient falling
• a complaint about a delay in diagnosing Alzheimer's, the management of the patient or the attitude of healthcare professional involved
• an ethical dilemma, often about confidentiality, capacity and consent.

Along with coroners' investigations, cases also involved medico-legal processes such as clinical negligence claims, NHS and ombudsman complaints, adverse incident investigations, local disciplinary procedures and GMC investigations.

About half of the cases involved GPs, with the rest involving doctors in other specialties.

Coroners' investigations

Coroners' investigations were a common reason for members to ask for our support. Of these cases, falls featured heavily as a cause of death. There was often scrutiny of whether more could have been done to prevent these.

The NICE guidance on dementia contains a section on assessing and managing other long terms conditions in people living with dementia where falls are specifically mentioned.

Another NICE guideline, 'Falls in older people: assessing risk and prevention is divided into preventing falls in older people and preventing falls in older people during a hospital stay.

In accordance with this guidance, it is important to routinely ask older patients (that is, those aged 65 years and older), whether they have fallen in the past year. If they have, it is appropriate to explore details of the fall(s) such as the frequency, context and characteristics.

Another key takeaway from this guidance is that older people who seek medical attention because of a fall, report recurrent falls in the past twelve months or demonstrate abnormalities of gait and/or balance should be offered a multifactorial falls risk assessment. This would normally be conducted in the setting of a specialist falls service.

Implementation of these guidelines is important to enhance patient safety but can also be invaluable in demonstrating that appropriate steps were taken to recognise and address falls in patients with dementia, amongst other conditions.

Complaints

Common allegations in complaints included:

• delayed diagnosis of Alzheimer's
• missed diagnoses of other health conditions often due to communication difficulties
• concerns that clinicians were dismissive of patients due to their cognitive impairment.

It's worth considering keeping your knowledge up to date, and the RCGP has a course for healthcare professionals on diagnosing and managing patients with Alzheimer's disease on its website.

Most complaints were made by relatives or carers rather than the patient themselves. There were several files where after they discovered there had been a complaint, the patient asked that it not be investigated or responded to. If there had already been a response, patients also complained that their consent had not been sought for this.

This highlights the need, when receiving a third-party complaint, to make sure you consider if the patient retains the capacity to decide who can complain on their behalf and receive a response containing their medical information. This approach aligns with the first principle of the Mental Capacity Act [2005] of starting from a presumption of capacity.

Disclosing information and assessing capacity

It was common for members to want support with ethical dilemmas about confidentiality and capacity or both in relation to patients with Alzheimer's. This was a far more common query than in MDU cases related to other types of condition.

Some examples of the queries where members needed medico-legal advice included:

• a relative with or without a lasting power of attorney (LPA) requesting disclosure of information or records to enable applications to support the patient's health or social care
• a relative contesting a changed will or LPA and requesting access to the patient's records where the doctor wasn't sure if the person had permission to act for the patient
• third parties such as the Office of the Public Guardian or the police requesting information when there were concerns about the wellbeing of a patient who lacked capacity. The concerns included possible neglect, financial fraud or an attorney/deputy acting contrary to their best interests.

Our advice on what to do in these scenarios is summarised in our guides on confidentiality and adults without capacity, assessing best interests and testamentary capacity. Such cases are often complex and members can contact the MDU advisory team for expert input into such requests.

In summary

As the above themes demonstrate, investigations and complaints related to patients with Alzheimer's and other forms of dementia can lead to complex ethical dilemmas and medico-legal processes.

If you are involved with a coroner's investigation, complaint or face a dilemma, get expert support from the MDU's medico-legal team.

This page was correct at publication on 27/09/2024. Any guidance is intended as general guidance for members only. If you are a member and need specific advice relating to your own circumstances, please contact one of our advisers.