Living with dementia: next steps after a diagnosis
A diagnosis of dementia can be a big shock – for the person with the condition, and their family. It can be difficult to know what to do, what decisions need to be made, who to tell, what support is available and what happens next.
Dementia UK is the specialist dementia nurse charity. Our nurses, called Admiral Nurses, provide life-changing support for families affected by all forms of dementia. They help people with dementia stay independent for longer, and support the people caring for them. They have the time to listen and the knowledge to solve problems.
This series of leaflets has been written by Admiral Nurses to help you take back control when you’re struggling and manage the future with confidence.
Emotional impact of the diagnosis
Being diagnosed with dementia can cause distress and a feeling of hopelessness – but this does not need to be the case. Understanding why the person feels these emotions, and how to manage them, can make the difference between living as well as possible with the diagnosis, or letting dementia adversely affect everything.
How a person responds to the early signs of dementia and after a diagnosis can depend on a number of factors, including:
the age of the person affected
the strength of their existing family network and other relationships
the effectiveness of communication within the family
whether the person is in employment
their beliefs and fears about what will happen as dementia progresses
their ability to handle the changes dementia can bring, and adapt their life to cope with this
their past history of how they manage problems and distress
Some people may feel significant anxiety and/or depression, both before and after diagnosis. This may be expressed through withdrawal, low mood and despair (depression) or agitation, worry, panic, seeking constant reassurance (anxiety) or a combination of anxiety and depression (see Sources of support at the end of this leaflet for the Dementia UK leaflet on anxiety and depression).
There are a few reasons why someone in the early stages of dementia could be experiencing emotional distress. These include:
difficulty adjusting to the diagnosis and worry about its effects on the family
cognitive changes (ie changes taking place in the brain) that affect how the person understands and processes information
personality and behaviour changes caused by the dementia
differences in the coping and communication styles that might take place within the family
Coping with a diagnosis – for the person and their family
People vary as to how they accept the diagnosis of dementia. For some, there is a degree of relief, as they now understand what is happening to them. But sometimes, their friends and family do not share this sense of relief, and this can cause communication issues. Some friends and family try to withhold their emotions and feelings about the diagnosis, for fear of upsetting the person diagnosed. This can lead to problems in the future with their relationship, or with how they communicate with one another; as well as disagreements about the coping strategies they employ, or decisions to be made in the person’s best interests.
Some families have difficulty accepting the diagnosis and the changes dementia can cause. This can be particularly true if the person’s symptoms do not seem to be what is commonly expected of dementia. Many people expect dementia symptoms to appear as memory issues, or concentration problems, and to appear in people who are older. However, younger people do get dementia: young onset dementia describes anyone with dementia under the age of 65, which is about 5% of diagnoses in the UK.
In some types of dementia, particularly frontotemporal dementia, the symptoms appear as changes to the person’s personality or the way they behave, with memory problems occurring very much later on.
Younger people, or those with less obvious symptoms, can sometimes receive comments such as: “It can’t be dementia, you remember everything about things that happened a long time ago”, or “You can’t have dementia; you’re too young”, or even: “They seem alright to me”. These comments can cause distress to the person living with the condition and their family.
After a diagnosis of dementia
Often, those who are diagnosed with dementia and their family accept that the diagnosis will alter the way they will live their lives. If dementia is diagnosed in a timely way, families can make decisions and plans for the future with the person diagnosed, so their choices about how they will live their life can be discussed and respected. However, not all family members feel able to take part in these discussions and decisions. Even within the closest family there can be disagreements about what is best for the person living with dementia, and this can lead to communication and relationship issues.
Once someone is diagnosed with dementia, there can be a temptation for family and friends to over-protect the person, or to focus on what the person can no longer do – rather than prioritise what they can do. This can negatively impact the person’s self-esteem and confidence. It is important not to focus solely on what the person can no longer do, but also on the strengths the person has, and what they can, do as well as what they enjoy.
Some people feel embarrassment or shame about their diagnosis, and may withdraw themselves from their family and friends. Similarly, some family members of a person diagnosed may feel ashamed or embarrassed, and may begin to cut themselves off socially. This can be particularly true if the person with the diagnosis begins behaving in different ways: if their social behaviour changes in conspicuous ways; or they begin to physically neglect themselves.
But withdrawing socially can lead to feelings of isolation and hopelessness, and it can negatively impact the self-esteem and wellbeing of both the person with the diagnosis and their family. If the news about the diagnosis is shared with others, and social connections with friends and family are maintained, this can have a positive effect on the emotions and wellbeing of everyone involved.
Understanding one another
It should be noted that the person with the diagnosis may have more difficulty controlling their emotions now, due to the physical changes happening in their brain. Dementia can also lead to misinterpreting and a difficulty processing information, so they may struggle more to understand the emotions of those around them. Understanding this may help you all relate to one another with kindness. When the person shows signs of distress, think to yourself: ‘Why are they responding this way? What might they be feeling? How best can I respond to this to help them?’
What can you do?
There are some practical things you can do to provide emotional support to the person with dementia and anyone around them. Families living with the effects of dementia have found the following helpful:
Join a social or peer support group. These can be attended in person or online. It can be helpful to know other people who have similar experiences and who may have some good advice and support to offer
Seek out advice, support, education and training
Investigate any companionship and befriending schemes in your area
Share thoughts and feelings with family and trusted friends. Isolation and bottling things up always, always make things worse
Share the diagnosis with family, friends and colleagues. Telling people what is going on can lead to more understanding and support
Investigate local services and support that focus on the needs of the person and their family. Local social services, local council websites or your GP might be able to provide advice
Develop coping strategies to live as well as possible with the diagnosis. Consider each issue as a problem with a solution, and investigate methods for solving it. There are products for sale that are designed for people with dementia, as well as advice on how to make your home more safe and comfortable (see Sources of support)
If the person has a rare or unusual dementia, investigate charities or support groups for that particular condition. They will be able to provide advice and information about complex symptoms and coping strategies
Plan for the future: having a family discussion about future plans, including applying for a Lasting Power of Attorney and making an Advance Care Plan, which can give you all peace of mind that you are prioritising the person’s wishes for the future (see Sources of support)
Find hope and purpose
Coping after a diagnosis of dementia can be difficult. But the more purpose and pleasure that can be found in life, for the person with dementia and for those around them, the better equipped you will be to navigate through the challenging times. Here are some ideas you can try:
Focus on the strengths: think about what the person can still do, and prioritise things that bring them peace and joy, such as listening to favourite music or walking in the garden
Encourage everyone involved in the person’s life to do the same: concentrate on the person’s strengths, and focus on activities that bring them joy (see Sources of support for information on Life story work). This will help them to maintain a good quality of life and self esteem
Try to avoid negative comments and correcting the person if they get something wrong or muddled up
Take it day by day. Focus on the achievable by setting a daily goal, such as: ‘today I’ll phone my friend’; ‘today we’ll walk to the shop’; ‘today we’ll have pancakes for breakfast’
Stay active and involved in your hobbies and social networks
Develop new opportunities and interests, perhaps through any support networks that you find