1. Help the person and carer move forward with their dementia diagnosis

Giving a dementia diagnosis

Even as a busy practitioner, it may be up to you to give someone a dementia diagnosis. Practitioners have told us that this can be challenging for even the most experienced clinicians. Working out what information the person needs, how much information might be helpful for them at diagnosis and dealing with their responses all during a limited appointment can be difficult.

Patients and carers tell us that how you give the dementia diagnosis is crucial to helping them understand how to make sense of their lives and how to move forward. 

We bring together current guidance, resources, research, and the experiences of others to support giving a person-centred, responsive, and informed dementia diagnosis.  This will help the person and their relative or carer understand their dementia diagnosis and how to move forward positively with dementia. 

To help you quickly access key information, Forward with dementia provides a brief summary of the issues relating to post diagnostic support from diagnosis and a direct link to the resource.  You can also guide the person with dementia and their carer to the area of the website tailored for them.

Current guidance on communicating relevant information at dementia diagnosis

Getting the balance of giving the person with dementia and their carer enough information to understand their diagnosis without overwhelming them can be tricky.  This will depend on the person and their wishes, but certain information is key.

Current evidence-based best practice guidelines in England, Wales and Northern Ireland* recommend key information you should offer the person and their family member or carers at diagnosis.

ACTIONS:

• Give the person the following information at diagnosis in written format (or a combination of both). Download the Take home information sheet to give to the person. 

• • Explain their dementia subtype and changes the person might expect as their dementia progresses.  The Alzheimer’s Society provides patient-friendly information on the different types of dementia.  
  • Tell the person with dementia and carer about healthcare professionals and social care teams with who may be involved in their care, and how they can get in touch for support.  NI Direct provide a helpful overview of dementia care professionals.
  • If the person drives, give them information on how dementia affects driving. Tell them that they need to tell the Driver and Vehicle Licensing Agency (DVLA) and their car insurer about their dementia diagnosis. The Alzheimer’s Society provides steps the person can take if they wish to keep driving.  
  • The person’s legal rights and responsibilities. The British institute of Human Rights provides a helpful booklet for practitioners on human rights and dementia. 
  • If the person is working or looking for work tell them about their right to reasonable adjustments (in line with the Equality Act 2010). The Alzheimer’s Society provides information on employment and dementia.
  • Tell the person with dementia and carer how the following groups can help and how to contact them:
    Local support groups, online forums and national charities – The NHS Dementia Guide provides a range of suggestions for support.
    Financial and legal advice services –  Dementia UK and the Alzheimer’s Society both provide relevant information.
    Advocacy services. NHS provides information on advocacy .

Recommendations | Dementia: assessment, management and support for people living with dementia and their carers | Guidance | NICE – Sections 1.1.6 and 1.1.7

In addition, the guidance states that at diagnosis you should:

• Explain how other health and social care staff can help. Check you have their consent for services to share information
• Confirm which people they would like services to share information with (for example family members or carers). Agree what information they would like services to share.

These decisions around consent and sharing information should be documented in the person’s records.

* SIGN clinical guideline for the management of dementia is used in Scotland  and the NICE guidelines are formally endorsed as applicable in Northern Ireland by the Department of Health and Health and Social Care Board.

Common misunderstandings about dementia

People with dementia and their carers are often unsure of what a dementia diagnosis means to them and how they live their life. It can be helpful for the person to talk about some common myths about dementia, to help them make sense or the changes they are experiencing and how they can respond to these.  Direct the person and their carer to find out  more here:  Adapting to your dementia diagnosis and carer A dementia diagnosis can help you adapt

ACTION:

• Explain the reality of life with dementia in a meaningful way.

Dementia is not part of normal ageing

Explain that changes to memory and thinking occur as part of normal ageing such as forgetting where we put our keys or taking longer to learn something new. The difference in dementia is that these changes affect a person’s everyday life. Dementia causes significant changes in cognition and cognitive abilities such as thinking, memory, word-finding that get worse over time and affect the person’s ability to carry out daily tasks and responsibilities such as work, caring and household tasks. This NIH.gov infographic suggests pointers for telling the difference between forgetfulness due to ageing or memory problems. 

Dementia and Alzheimer’s are not the same thing

Explain the difference between ‘Alzhiemer’s’ and ‘dementia’.  Alzheimer’s disease is just one type of dementia. 

ACTIONS:

• Clarifying if they have Alzheimer’s disease or another type of dementia. This may help them to understand their symptoms better – especially if they have a different dementia subtype which affects spatial awareness or speech more than memory. 
• Tell them about The Brain Tour by Alzheimer’s Research UK. This can help the person to understand changes to their brain and how they might be affected 
• Explain that dementia affects people at the cognitive, physical and emotional levels and leads to disability.
• Sometimes practitioners avoid using the word ‘dementia’ to spare the person’s feelings or soften the blow at diagnosis. Instead they talk about ‘being a bit forgetful’ or ‘having some trouble finding the right word’.  This can be confusing for the person.
• Be specific about what their condition is. This may help the person to make sense of their diagnosis. Using a cancer diagnosis as a similar example may help; most people would be upset at being told they have cancer but professionals are now agreed it is better to use the correct word than similar ones such as ‘growth’ or ‘tumour’.

Dementia does not only affect memory

Clarify that it is not only memory that is affected by dementia. Explaining these relevant to their dementia subtype can help people to understand the changes they are experiencing now and may face in the future; and plan appropriate support.  Common early changes other than memory include:

• Changes in concentration
• Difficulties with everyday tasks, such as problems working out the right change when shopping
• Problems finding the right word or following a conversation 
• Confusion about time and place
• Decreased initiative, loss of interest in hobbies, social withdrawal, apathy
• Personality changes, for example irritability
• Changes in mood 
• Sensory changes such as changes in vision

NHS provides guidance on common dementia symptoms related to subtype. 

Practical hints to help the person understand their dementia diagnosis

ACTIONS:

• Present the dementia diagnosis in a sensitive way.
• Take into account how much information they can take on board.
• Allow time for questions about their diagnosis. As time is limited you might consider:
• Arrange an extended appointment

If possible, arrange an extended appointment to give the person their dementia diagnosis.  This will help allow enough time for you to talk through all of the key areas to meet best practice standards (Current guidance on communicating relevant information at dementia diagnosis), and to support the person to understand the information you have given them.

• Arrange a follow up appointment 

The person (and their carer) may need time to process the information you have given them about their diagnosis. They may not have questions about their diagnosis at the time, but soon after may realise they have lots they want to know about dementia.  

It is important that you offer a follow up appointment at the diagnosis appointment.  This will give the person the opportunity to come back when they have had time and space to reflect on what they have been told, and talk to their friends and family too.

• Ask the person what information would be helpful to them right now

Give the person options about how much information they would like. Some people may prefer to know only how dementia will affect them at the moment; others like to know as much information as possible to prepare for the future can prevent them feeling either underprepared or overwhelmed.  

 Arrange follow up appointments so you can stagger the amount of information you give the person and allow you to give information that people feel ready to accept and act upon. For example, for some talking about advance care planning (ACP) at time of diagnosis and putting financial affairs in place may not be an immediate priority. 

• Signpost the person with dementia and their carer to the appropriate section of Forward with dementia to help them find practical hints to get the most out of their appointments to better understand the diagnosis Carer –Understanding dementia helps you to live positively with the condition. Person with dementia –  Understand your dementia diagnosis.
• Download our Checklist for communicating a dementia diagnosis to use in your appointments with patients and carers.  

Next, dealing with how the person may respond to their dementia diagnosis and how to manage this.