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Helping someone with Dementia

Helping someone with dementia? Our checklist helps you to understand the condition and organise the necessary care and support they need.

Dementia is an umbrella term

Dementia entails chronic widespread cognitive impairment (i.e. impaired memory, language, attention, thinking, orientation, calculation and problem-solving) associated with changes to functional abilities (such as dressing, driving, shopping, eating etc.) 

Ageing is the single greatest risk factor for the onset of most types of dementia. 

During the course of the illness, around 80% of those affected develop behavioural and psychological symptoms of dementia (BPSD) such as agitation, aggression, hallucinations, wandering and sleep disturbance.  Many behavioural symptoms can be signs of distress - either due to psychotic experiences, discomfort, pain, or basic needs not being met. 

Dementia is common

Data from Public Health England show that in England, around 4.3% of people aged 65 years or more have been diagnosed with dementia.  Some people can remain undiagnosed for many years and so it’s likely that the figures underestimate the actual numbers and there are more people living with dementia than we recognise.

Dementia has many causes

There are varying reports about the frequency of different types of dementia although Alzheimer’s disease is consistently the most common (50-60%) followed by vascular dementia (17-20%), and dementia with Lewy Bodies (20%).  Other conditions such as Frontotemporal dementia, Parkinson’s disease and others make up the remaining 10%. 

Dementia is a progressive condition

Dementia is a progressive condition, which means that the symptoms will gradually get worse – the level of disease is often classified as mild, moderate or severe .

The condition progresses differently across individuals and the different sub-sets of dementia have different characteristics in terms of early symptoms.  Consequently, everyone has their own personal experience of the disease with differing needs for levels and types of care and support.

Dementia services are developing

Historically, dementia services have been poorly addressed requiring dementia charities to relentlessly campaign for improvement. The campaigns continue but there have been promising changes in recent years and a clear Government commitment to improve levels of diagnosis, support, and research.  Providing more support post diagnosis is a key pillar of recent service improvement plans.

Key sources of support to help someone with dementia

The following organisations provide invaluable information and advice for people living with dementia, their families, friends and carers.  They draw on decades of experience in caring, campaigning and researching for people living with dementia.  

Alzheimer's Association Despite its name, this national charity provides support for all forms of dementia, not just Alzheimer’s disease.
The charity supports an online community and has a Helpline: 800 272 3900

Dementia UK This charity provides dementia support for families through their specialist Admiral Nurses.  Admiral nurses provide invaluable and compassionate one-to-one support, guidance and solutions.     The charity also has a Helpline: 0800 888 6678

The Lewy Body Society This charity is focused on tackling Lewy Body Dementia.  They can provide information about the condition, raise awareness and fund research.  

The Brain Charity This charity provides emotional support, practical help, and social activities to anyone with a neurological condition (including Dementia and Parkinson’s disease) and to their family, friends and carers. Helpline: 0800 008 6417

The Carents Room Dementia Checklist

If your parent has been diagnosed with dementia, and you are helping to organise their health care, then this checklist summarises some of the issues you might want to discuss with them.

The checklist is not a substitute for medical advice - always seek professional help. Remember healthcare professionals will not share information about a patient unless they have been given permission to do so.

When someone is diagnosed with dementia, they (and/or their carents, relatives or carers as appropriate) should be given information that explains:
a) What type of dementia they have and the sort of changes they can expect as the condition progresses
b) Information and contact details about the health and care professionals who will be involved in their care
c) Advice about driving – if appropriate – including how dementia affects driving, and the legal obligation to inform the DVLA and any car insurer about a dementia diagnosis
d)Information about other sources of advice and support including financial and legal advice services and advocacy services.
e) Information about what to do and where to get further advice if things change
f)Advice about planning ahead (depending on what is appropriate, this can cover issues such as Lasting Powers of Attorney, and decisions and plans about care and treatment at different stages of the disease)

After a person is diagnosed with dementia, they and their carents, relatives or carers (as appropriate) should have access to a memory or dementia service to ensure appropriate access to support and treatment.

Memory services are organised very differently across the country and range from GP-led services with input from specialists to community or hospital based services.

Your GP or care coordinator can discuss the services available to you locally and, if appropriate, help to arrange an appointment.

Accessing and arranging support for someone who has been diagnosed with dementia can be very challenging because it often spans the public, private and third sectors and entails complex funding arrangements.
A named care coordinator can be invaluable in opening doors to dementia care – especially if they have a good understanding of the person and their needs and how to navigate the health and social care system.
For these reasons, national guidelines recommend that people living with dementia should have a single named health or social care professional who is responsible for coordinating their care.
Without a named coordinator, your parent is less likely to access appropriate care and risks experiencing poor quality care and support.

Anyone who is diagnosed with dementia should have a care and support plan which has been agreed and shared with themselves, carents, relatives or carers (as appropriate) and other relevant professionals.
The plan should specify when and how often it will be reviewed and should also cover how any additional co-existing long term conditions should be managed.
It should be reviewed at least every 12 months

People living with dementia should be supported to consider how their condition might develop and to understand the arrangements they can make now to shape their future. Typical arrangements include lasting powers of attorney and advance statements and decisions or preferences regarding future care and treatment.

There are no drug treatments that can cure Alzheimer’s disease or any other common type of dementia.
However, there are some medicines which can help to ease the symptoms although the type of medicine and its use depends on the cause of the dementia and the stage of the disease.

The Alzheimer’s Society has excellent information about the medicines used for different types of dementia. It is important to understand that the drugs do not affect the progression of the underlying disease in the brain, they simply relieve symptoms or slow their progression and the beneficial effects are not sustained in the longer term.
To find the relevant page on the Alzheimer’s disease website, go to the section called “Types of dementia” and click on the relevant advice.

There are three groups of medicines to be cautious about:

Medicines which increase the “anticholinergic burden”
This is a technical pharmacological term covering a vast number of different and commonly prescribed medicines. Often one or two – even a few – of these medicines can be tolerated but too many can result in an additive effect (burden) resulting in unwanted side effects.
It is therefore important to ensure that anyone with dementia has their regular medication reviewed on a regular basis (six monthly is an average benchmark).

Medicines which act as major tranquillisers or antipsychotics
These drugs are often prescribed to manage the behavioural and psychological symptoms associated with dementia (BPSD) – symptoms such as agitation, aggression, wandering or distress.
However, these medicines should be used with care because they have some serious side effects especially in people living with Parkinson’s disease dementia and dementia with Lewy Bodies.
Experts are also concerned that these medicines are being over prescribed in some people with dementia when measures such as understanding and addressing the underlying reasons for any distress (eg pain, infection, not having the right care) could be more effective. Best practice for managing BPSD entails working with those affected, and involving their families, carents and carers as appropriate, to understand and address the underlying issues before starting pharmaceutical treatments. If these drugs are prescribed, then the reasons should be clearly specified from the outset and the prescription should be checked and reviewed every 6 weeks.

Antidepressant medicines
Research evidence does not provide strong support for treating dementia with antidepressants. National expert guidance also advises against the use of antidepressants to manage mild to moderate depression in people living with mild to moderate dementia, unless the medicines are indicated for a pre-existing severe mental health problem.

National expert guidance explicitly states that, on the basis of research evidence, there is no recommended benefit from
• acupuncture,
• ginseng,
• Vitamin E
• herbal formulations

A range of interventions and activities can help to promote wellbeing and help slow memory loss in people living with dementia, especially in the earlier or moderate stages of the disease. Your care coordinator can connect your parent with the most appropriate activity provider.

The activities which are specifically recommended in national expert guidance are most valuable for people living with mild to moderate dementia. These are:

Cognitive stimulation
This term covers a range of activities and discussions (usually in a group) that are aimed at general improvement of cognitive and social functioning

Group reminiscence therapy
A brief and structured intervention in which participants share personal past events with peers. This approach has been shown to be promising for improving wellbeing and reducing depressive symptoms among institutionalized older adults. However, despite the considerable interest in reminiscence group therapy, controlled studies to determine its specific benefits as compared to generic social interactions with peers (group conversations about everyday subjects) are still lacking.

Cognitive rehabilitation / occupational therapy
This entails identifying functional goals that are relevant to the person living with dementia, and working with them and their family members or carers to achieve these. The emphasis is on improving or maintaining functioning in everyday life, building on the person’s strengths and finding ways to compensate for impairments, and supporting independence. Cognitive rehabilitation does not aim to improve cognition, but addresses the disability resulting from the impact of cognitive impairment on everyday functioning and activity. Rehabilitation is sometimes referred to as ‘reablement.

Increasingly health & social care services, local authorities and voluntary organisations are developing services to enable people living with dementia, and their families, carents and carers, to live meaningful and independent lives.

This support is wide ranging and provision varies widely across localities. Typically it might address appropriate housing, maintaining independence, meaningful daily activities, support for carers, transport, maintaining relationships.

The care coordinator will be able to explain what is available locally and enable appropriate access.

Being admitted to hospital can be especially distressing and challenging for someone living with dementia.

A hospital admission can trigger the onset of delirium, exacerbate the symptoms of dementia, permanently reduce independence, and increase the likelihood of discharge to residential care and readmission to hospital.

The care planning process for people living with dementia is not simply a paper exercise, it is designed to minimise any unnecessary disruption to someone living with dementia including an avoidable hospital admission.

Each region has liaison mental health services. These services can provide expert assessment, advice and support for people with diagnosed dementia who are admitted to a general hospital.

National guidance emphasises the importance of providing training and support for anyone who is acting as a carer for someone living with dementia. This includes spouses and carents, not just formal carers. Carers should be given support not only to cope with their caring responsibilities but also to enable them to have an independent life alongside caring.

Contact your GP to find out more about local services, groups and training opportunities. You might find your local branch of Carers UK especially useful. We also recommend the excellent charities we listed at the start of this checklist.

A high proportion of people living with dementia (72%) also live with multiple mental and physical health problems (comorbidities). The most common problems are arthritis, hearing problems, heart disease or a physical disability.

Untreated physical comorbidities accelerate cognitive decline in people living with dementia by about 1 to 2 years and can result in avoidable mental health crises or hospital admissions eg untreated diabetes, untreated urinary tract infections, untreated depression.

The care plan should cover how any additional comorbidities should be managed.

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Published December 2020

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