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.
Changing relationships and roles
Receiving a diagnosis of dementia can change the way people think about themselves, as well as the way other people behave towards them. When someone is diagnosed with dementia, those around them can become frightened on their behalf; worrying that the diagnosis means the person is vulnerable. This can cause them to become over protective. They might encourage the diagnosed person to stop driving, give up their job or reduce the time they spend participating in their hobbies or activities they enjoy.
A change in the person with dementia’s abilities, alongside this growing sense of protectiveness, can lead to changes in the roles of family members. For a couple, one might now feel that they are turning into a care-giver for the person with dementia, rather than an equal partner.
Where children are involved in caring for a parent with dementia, they can sometimes feel that the roles have reversed, and that they are now increasingly responsible for the person who used to look after them.
These changes in roles can be very difficult for people. They can cause conflict, if the people involved have different opinions on what role they now occupy. This can lead to arguments and resentment – not least from the person with dementia, who might not agree that they need to be looked after, or with the decisions that their relatives make on their behalf. Some forms of dementia – particularly frontotemporal dementia – can also cause changes in the person with the diagnosis’ personality and social behaviour.
This can lead to misunderstandings.
There are some practical steps you can take to stay connected to the person with dementia and other family members. These include:
Speak honestly with your family about what you are thinking and feeling so you can understand each other’s perspectives
Share the diagnosis with family, friends and colleagues – this can lead to more understanding and support (if either the person with dementia or any of their family feel any shame or worry about what other people might think, please see Sources of support for our leaflet on Dealing with stigma)
Consider what you personally miss from your changing relationship. If the person with dementia was previously your confidante, is there someone else within the family or your friendship group who you could turn to? If you took part in particular activities that are no longer possible, can you introduce a modified version? Or can you continue a similar activity by yourself?
Let family and friends know what the changes are, to the person and your relationship; so they know what to expect and how they can respond
Give friends and family advice and support on how to best to support the diagnosed person, so they can keep their interactions enjoyable and positive
Try to find new ways to enjoy the time you spend together, through listening to favourite pieces of music or watching films you all love. There can often be moments of connection and affection to be found
Focus on the strengths the diagnosed person has, and all of the things they can do; encouraging friends and family to do the same – rather than concentrating on the negatives of dementia. This will help you all maintain your self-esteem and quality of life
Accepting the changes to your role
You might find that you are able to find feelings of purpose and worth from your new role. Here are some methods that might help you with this:
Say yes when family and friends offer to help – but guide them as to what would best suit everyone’s needs
Develop coping strategies that address the particular issues that you are both facing in the moment. For example, forgetting where keys are, where a particular room is, or what day visitors come can all be addressed with notes, reminders, routine and prompts
You could engage in work to increase awareness about dementia, to your family, friends and your local community; so that the stigma is reduced and people have a more realistic understanding of the condition
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
Many families affected by dementia find new friends, support groups and activities through the diagnosis
Staying active and involved with your existing social networks and hobbies can help with your self-esteem and enjoyment of life
Planning for the future
Discussing your ideas about future plans, care requirements, finances and expectations can help avoid conflicts down the line. It is very important, if possible, to consider arranging a Lasting Power of Attorney (LPA) and filling in an Advance Care Plan (ACP) together as a family, so the wishes of the person diagnosed with dementia can be respected if, at some time, they are unable to make decisions (please see Sources of support at the end of this leaflet).
There are other future plans you can consider, which will help you to live as well as possible in the present.
Speak to your family about any plans which were ‘put off’ due to everyday life, such as taking a dream holiday or visiting infrequently seen relatives
Have an open conversation with the whole family about your future expectations regarding finances, health and welfare. This will help you identify what the person with dementia wants,
and anticipate any areas of disagreement
If either of you are in work, speak to your employers and colleagues about the diagnosis. Support and some adaptations to your hours or workload could help you continue working