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.
Being told you have dementia can lead to the person being diagnosed, their family and friends focusing on the negative aspects of the diagnosis. Worrying about things you find difficult, or things you might not be able to do in the future, can cause distress, depression, anxiety and fear – reducing the quality of life for everyone.
The good news is there is evidence that people living with dementia can remain healthy, with a good sense of well-being, by being active and socially engaged. People who focus on their strengths, and the things they like and want to do, are able to cope better with the changes that dementia can bring, and can continue enjoying their life.
By contrast, research indicates that those people with memory loss who withdraw from activities and who become socially isolated, are more likely to be bored, distressed and deteriorate more rapidly. So, it’s important to take steps to look after your physical and mental health.
Practical ideas to improve health and wellbeing
Ways of approaching everyday life:
Identify the strengths the person has rather than the difficulties caused by their dementia
Engage in activities and interests that match and encourage the person’s strengths and abilities
Adapt social situations so they are easier to manage:
Scale down family or friend events to a few people at a time
Reduce the number of distractions when communicating; for instance, turn off TVs and radios; speak to one person at a time
Focus on one thing at a time
Encourage activities or hobbies that have meaning, interest and enjoyment such as volunteering for local organisations; creative activities such as art, writing, music or photography; dance; gardening etc.
Adapt the person’s home to make it as safe and comfortable for them as possible (See Sources of support for Dementia UK’s leaflet on this)
Find support through local groups and clubs. Peer groups in particular can be very supportive, and a useful source of advice from people in a similar situation
Ways of approaching exercise and physical health:
Make sure the person with dementia, and their family supporter/s, have their physical health monitored to receive any appropriate health advice or treatment. It is important to:
attend regular screening checks as recommended by your GP
take medication as prescribed
have regular reviews of medication
report any sudden changes in physical health, memory, concentration or mental health to the doctor
It is important for people with dementia and those around them to maintain and improve their physical health. This can be social and fun, and include:
Make sure you all enjoy a healthy diet which includes:
green leafy vegetables
As well as this, it is advisable for everyone to:
maintain a healthy weight
drink 1.5 litres of fluid daily (this doesn’t include alcohol!)
spread any alcohol consumed over three or more days, not exceeding 14 units per week
stop smoking – as smoking can increase the risk of physical and cognitive conditions. Your GP can help you find local services to support you to quit
get enough sleep. Poor sleep can affect concentration and cognitive function, and can be prevented by:
a sleep routine: go to bed and get up at the same time each day
avoiding caffeine before bed
exercising earlier in the day
keeping TVs and phones out of your bedroom, to create a calm space
ensuring the bedroom is cool, quiet and dark, to help you sleep
avoiding alcohol after 6pm, as it can affect sleep patterns
nap wisely, if at all. Keep daytime sleeps to 30-60mins naps, and only nap before 3pm
experiment with slightly later bedtimes, if you find yourself unable to sleep once in bed
Ways to boost a sense of well-being:
Engage in ‘Life story work’, where you reminisce together and perhaps create a photo or memory book. This can be valuable for boosting self-esteem – it helps people to think of who you are, what you have done, and what you can still contribute (See Sources of support for Dementia UK’s leaflet on this)
Companionship is very important. It boosts a sense of belonging, whether it comes from time spent with family, friends, pets or volunteers
Sensory stimulation can help with relaxation, perhaps through:
looking at beautiful images
pictures, paintings, strong colours
Live for the day; focus on achievable daily goals, not ambitious long-term ones
It is important to try to address as a family any issues or challenges that might prove difficult, now or later. This can include issues with family finances, decisions about medical treatment or future care, and concerns around the person with dementia and their desire for independence, including driving, their living arrangements etc. Please see Sources of support at the end of this leaflet for Dementia UK’s leaflets on driving, arranging a Lasting Power of Attorney and Advanced Care Planning.
Remember to continue to seek help and support
There is a lot to take in when someone is diagnosed with dementia, and it’s understandable that sometimes both they, and their family, focus on the negative changes. But, as this leaflet explains, people can still live as well as possible with dementia if they adapt their life, interests and activities towards the things they can still do, and devise plans of how to cope with the changes that are more problematic.
Health and well-being can be maintained and improved by making some adaptations to everyday life and by focusing on strengths and abilities. Sometimes it’s difficult to accept that things are changing; that what used to be easy is now difficult. It’s important to speak with family and friends, explain the issue, and ask for their help if needed.
Some people may have difficulty coming to terms with the changes and need help to understand and accept what is happening to them. They may benefit from counselling. Simply talking this through with someone who is independent from the family can be helpful to explore the thoughts and feelings experienced and to plan a way forward.