Think Dementia factsheet: What is fair dementia care?

Campaigners say being asked to pay for nursing costs comes as a “shock” to many, with weekly care home costs with 24-hour specialist nursing reaching £1,000.

The Herald has partnered with Alzheimer Scotland to launch a campaign aimed at ending this imbalance between care needs.

Working alongside the Fair Dementia Care Commission, we are calling on the Scottish Government to end unfair charges for care services.

To find out more about our campaign, read below, or visit the Alzheimer Scotland website at www.alzscot.org.

Alzheimer Scotland is Scotland’s national dementia charity. Their aim is to make sure nobody faces dementia alone. The charity provides support and information to people with dementia, their carers and families and campaign for the rights of people with dementia and fund vital dementia research.

What is The Fair Dementia Care Commission?

The Fair Dementia Care Commission was established by Alzheimer Scotland to consider the inequality in access to health care and the disproportionate impact of social care charges faced by people with advanced dementia, their families, and carers in Scotland. 

Alzheimer Scotland published the 'Delivering Fair Dementia Care For People With Advanced Dementia' report in January 2019. The report set out a firm definition for advanced dementia for the first time. It also identified the inequality people living with advanced dementia face in terms of access to health care. The report calls for a number of reforms, including equal access to free healthcare for people living with advanced dementia.

What is Fair Dementia Care?

Fair dementia care recognises that dementia is caused by progressive neurological diseases and that the increasing complex needs in advanced illness there require health and nursing care.

At present too many people with advanced dementia are not getting the health or nursing care they need and are more likely to be paying social care charges.

Fair dementia care means ending those inequalities and ensuring that people with advanced dementia get the health and nursing care they need and which is free in the same way that it is for those with other progressive and life limiting illnesses.

To read the report and to add your support the campaign visit www.alzscot.org/fairdementiacare.

Why is current dementia care unfair?

Dementia is caused by progressive and terminal neurological diseases such as Alzheimer’s disease.

Current policy and practice does not reflect the increasing understanding of the nature of advanced dementia and because of this our care system does not recognise or respond appropriately to the increasingly complex health care needs which are associated with advanced illness.

The current response to dementia is primarily a social care response – people who are eligible, access social care support in non-residential settings (their own homes, day care settings etc), or residential settings (care homes).  Social care is subject to charges based on a financial assessment.

The lack of agreed understanding or definition of advanced dementia means that we don’t recognise when people progress to the advanced stage off dementia and they continue to be supported through a primarily social care model. This gives rise to two glaring inequities;

• An absence of equality of access to the health and nursing care that is available to people with other progressive and terminal illnesses.
• People with advanced dementia are disproportionately subject to social care charges.

The key aims of Alzheimer Scotland’s Fair Dementia Care Report and Campaign is to bring end to these two inequalities.

What do we mean when we talk about health and nursing care needs in advanced dementia?

In advanced dementia increasingly complex physical and psychological changes occur which need expert health and nursing care. These changes are a complex interplay between cognitive and physical decline.

Physical changes can include:

• Loss of ability to communicate
• Sensory loss
• Difficulties swallowing and increased risk of food aspiration
• Risk of malnutrition or poor hydration
• Difficulty breathing
• Skin integrity through poor diet and lack of mobility
• Problems with bladder and bowel function such as urinary or bowel incontinence, constipation and impaction
• Pain
• Increased frailty and susceptibility to illness or infection
• Increased risk of Delirium

Psychological changes can include:

• Increased distress
• Agitation, irritability, restlessness and pacing
• Psychotic symptoms such as visual or auditory hallucinations and delusions
• Mood disorders such as depression, anxiety and apathy

While every individual’s experience of advanced dementia is unique to them. A coordinated range of clinical, health and nursing expertise is required to respond to these complex health care needs. This might include the following areas of expertise.

• Consultant Geriatrician – provides a specialist overview in care of older people. Whilst the involvement of other specialist consultants will also important – e.g. for younger people and for psychological conditions

• Mental Health Expertise – (Psychiatrist, psychologist and community psychiatric nurse) for promotion of psychological wellbeing and responses to stress/distress and psychological conditions

• District Nurse - Management and guidance on physical health conditions such as bowel and bladder function and skin integrity.

• Allied Health Professions - Occupational therapy for engagement, occupation and environment Physiotherapy for pain management and movement Speech and language therapy for communication and nutrition/hydration issues Dietitian for nutrition and hydration.

• Palliative care specialists Approaches to the management of pain and other distressing symptoms and end of life care.

While some people may have access to some of these healthcare specialists it is not consistent, and this type of approach is not currently available across Scotland.  These are not intended to replace but work with existing social care support to enhance care, support and treatment provided.

What is the cost to individuals with advanced dementia living at home or in care?

The report estimates that people with advanced dementia are paying approximately £50.9m per year in social care charges for needs that should be free health care.

What can the public do?

In short Fair Dementia Care seeks to end the current inequities faced by people with advanced dementia and ensure that their complex health care needs are recognised and free at the point of delivery.

Watch Alzheimer Scotland’s short documentary ‘Dementia: the true cost’ and sign up to support Fair Dementia Care at www.alzscot.org/fairdementiacare today.