2. Responding to the person’s needs at their dementia diagnosis

A range of reactions to manage at diagnosis

Dementia can be a life-changing diagnosis. As such, people will respond to their diagnosis in a range of ways. People may be shocked, upset, fearful, relieved or show a mixture of emotions. Some people may have lots of questions, others none. People may question or reject their diagnosis.

Dealing with the person’s response to their diagnosis can help the person to understand, adapt to, and accept their diagnosis. These are all key steps in helping the person move forward with dementia.

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 signpost the person with dementia and their carer to the area of the website tailored for them.

Helping the person manage the dementia ‘news’

Your support for the person and their carer to come to terms with their diagnosis starts right from the time you give the diagnosis. Although some people may suspect they have dementia, it can still be a shock to hear this or see it written down. As a practitioner, you may be giving the diagnosis or talking about dementia with the person (and their carer) for the first time. Either way, broaching those initial discussions and managing reactions to the diagnosis can be challenging. The Irish Hospice Foundation suggests 5 practical steps for delivering ‘bad news’. These include:

Prepare yourself – making sure you have all the information you need to deliver the diagnosis sensitively

Make a connection – take your time to make a personal connection and find out what they already know

Warn them – then tell them – give the information in small, manageble chunks in clear and simple language

Acknowledge their shock and deal with their concerns – give them time to take in information and voice any concerns

Follow up with practical support – outline what happens next and what support is available.

Delivering Bad News – YouTube . You can apply the following principles to support someone through to come to terms with their diagnosis.

Helping the person (and carer) come to terms with their dementia diagnosis

How you talk about dementia and offering practical solutions to cope with changes will help the person (and their carer) understand their diagnosis and how it may affect their life now and as they go forward.

ACTIONS:

Give the person a realistic sense of hope for the future and being clear and candid about options for support.

Here are some tips for practitioners:

Recognise the person’s feelings

Reassure the person that their feelings about dementia diagnosis are normal and understandable. For example, feeling fear, denial, rejection, disbelief, relief, confusion, or overwhelmed. Talk about how these feelings will change over time, and who can help them to come to terms with how they feel. The Alzheimer’s Society highlights helpful support for helping the person to adjust after diagnosis.

Acknowledge the impact of diagnosis

Let the person (and their carer) know that you understand this will have a big impact on their life and on others too. This may help reassure the person that their concerns are taken seriously. The impact of dementia is shared by six people in this video by SCIE.

Talk about life with dementia positively

Encourage the person (and their carer) to think about positive steps they can take now they have a dementia diagnosis. Explain how their diagnosis can help them to understand the changes they have experienced and how they can find support to get their life on track.

The Alzheimer’s Society provide a guide to using positive language when talking about dementia.

Recommend early support

Explain that early support can help the person manage change and move forward. This may be getting support from friends and family, but also getting specialist dementia support in place as soon as possible. The NHS provide advice on what to do after diagnosis.

Sensitively manage expectations around cure and treatment

While there is currently no cure for dementia, a range of drug and non-drug therapeutic interventions can help with symptoms and slow down progression. Although drug treatments may be dependent on dementia subtype and stage, many therapeutic interventions are suitable for most types of dementia. Information about current treatments can be found in the NHS Dementia Guide.

More detailed information on best practice can be found in the NICE clinical guidelines. See section 1.4 for details on interventions which promote cognition, independence and wellbeing. See section 1.5 for details on recommended pharmacological interventions.

Looking after the general health of the person with dementia

The dementia diagnosis can cloud other health conditions. Good management of general health can enable the person with dementia to maintain a good quality of life.

ACTIONS:

Review general medical health

Ensure person with dementia and carer has systems in place for taking medication

Remind person with dementia and carer about need for regular teeth cleaning and oral health

Check for risk of falls and refer as appropriate if necessary

Check vision and hearing as impairment can magnify cognitive disability.

Common questions about how a dementia diagnosis can be life changing

Signpost the person and their carer to the appropriate sections of Forward with dementia to help them understand how their lives may be affected by dementia and what they can do to help manage these changes.

People with dementia and carers say that being supported to continue with the things in life they enjoy doing or need to do is important. They may ask your advice about the following areas of life:

Driving

Dementia affects the ability to drive. Everyone with progressive dementia will have to stop driving at some stage. Jurisdictions vary in rules. You as a medical practitioner have a responsibility to advise those unsafe on the road to transition to non-driving. If in doubt, refer for onroad testing.

Read more about decision making and the impact stopping driving may have on people with dementia and the Consensus guidelines for driving and dementia developed by Newcastle University.

Providing information on driving is recommended as key information to give at diagnosis in current best practice guidelines. See the Article 1.1 for Help the person and carer move forward with their dementia diagnosis for Current guidance on communicating relevant information at dementia diagnosis

The Driving and Dementia Toolkit provides algorithms and frequently asked questions to help practitioners evaluate safety to drive for people with dementia. Although this was developed in Canada, and different legal systems apply – much of the information is general and applicable in the UK too.

Medico-legal

As dementia progresses eventually the person will lose legal competency. It is important to plan ahead while they have capacity to avoid complications later.

ACTIONS:

Alert the person with dementia and carer of the importance of preparing for the future.

Explain about Lasting power of attorney as well as wills and advance care planning.

Signpost the person and their carer to read about planning ahead in Making plans and decisions.

Visit Making plans and decisions For more information and guidance on medico-legal issues and planning.

Work

As a practitioner, you may have some responsibility for judging whether a person with dementia is safe to continue working, which could be as a paid employee or as a volunteer. Being able to continue working can help people to stay financially secure and active and is good for morale. Younger people may be particularly affected. Dementia UK provides guidance on employment, flexible working and benefits.

Providing information on work and employment is recommended. See section Current guidance on communicating relevant information at dementia diagnosis Help the person and carer move forward with their dementia diagnosis

Genetics and heritability

People with a family history of dementia often worry that the condition is hereditary or that they may pass it on to their own children. The risk depends on the type of dementia. For most Alzheimer’s the risk is double (or slightly more). Put this in context – the risk of dementia developing in a person’s 60s is 2-4%, and in their 70s about 10%.

There is a rare autosomal dominant type of Alzheimer’s which typically presents in a person’s 40s or 50s. Genetic testing for this requires referral to a specialist.

As regards other dementias: fronto-temporal dementia may convey a 30% risk to first degree relatives. Lewy body disease increases the risk moderately. Vascular dementia risk depends on many factors making it hard to be sure.

The Alzheimer’s Society provides information about dementia risk and prevention .

Younger relatives can reduce their risk of dementia

Suggest that there are many things people can do to look after their health to reduce their risk of dementia: keep physically active, eat a healthy diet, keep your mind active, stop smoking, wear a hearing aid if partially deaf, socialise and drink less alcohol. The NHS Dementia Guide provides information on dementia prevention.

Staying at home

People are often concerned that having dementia means they will need to go into care. Reassure the person that going into care is only considered in late stages of the dementia and there are many alternatives such as staying in their own home with support.

Recommend putting support in place early and having a plan for care can help. The NHS Dementia Guide suggests tips for making the person’s home dementia friendly, advice for carers to support the person at home and how to find help and support.

Family roles and relationships

Sometimes people are worried about the effect of dementia on their relationships with family and friends. They may worry about being a burden, being rejected or being treated differently. This may be particularly worrying for people who already manage difficult relationships.

Encourage the person to stay as socially active as possible. Signpost the person and their carer to the relevant area of Forward with dementia to read more about managing their relationships ( Coming to terms with dementia for the person and Carer). The Alzheimer’s Society provides a booklet with practical advice to help people manage their relationships.

Suggest that the person may make new relationships because of their dementia diagnosis, for example by joining a support group with other people who are diagnosed with dementia. Sharing experiences may help with problem solving and bring new friendships.

Being a carer

A relative may now become the person’s ‘carer’. Whilst some people may have already been providing support, this can be a significant relationship change for people to manage. The carer may worry about the responsibilities of caring and how it might change their life. They may also wonder how it might affect their relationship with the person with dementia.

ACTIONS:

Point them to the NHS Dementia guide which provides advice for looking after someome with dementia

See the carer separately. Carers have high rates of depression, stress, social isolation and poor physical health but may not want to disclose this in front of the person with dementia. Consider the carer may have his or her needs to be treated as a patient. Help them deal with their feelings, frustrations and practical difficulties.

Suggest they contact the Alzheimer’s Society.

Signpost them to Forward with dementia section on Managing symptoms and changes – Carer.

Cultural and religious practices

People from a range of faiths and cultures may worry about keeping their current practices and roles going. They may worry about losing their faith or feel that their faith is being tested. Different cultures may also have different beliefs about dementia and care. Read Why does culturally diverse dementia support matter. Dementia UK provides information on cultural and religious awareness which may help the person to continue with cultural and religious practices, and access appropriate care and support.

ACTIONS:

Signpost to information on cultural and religious awareness.

The Social Care Institute for Excellence provides helpful information about responding to cultural and religious needs of people living with dementia

This list of common questions is not definitive and what is important to each individual will vary. What matters is that the person understands that their life doesn’t have to stop, but that changes can be made to keep doing the things they do. This is a key part of post diagnostic support from the point of diagnosis.