Life after a diagnosis
A diagnosis of dementia is life-changing. But it does not mean you have to stop doing the things that matter to you. The NHS encourages people to keep doing what they enjoy, stay connected with others and plan ahead.
Everyone’s experience is different. Try the ideas that suit you, and come back to others later.
Routines and memory aids
A regular routine can make days feel more manageable and reduce the effort of remembering. The NHS suggests:
- keeping to a regular daily routine
- putting a weekly timetable on the kitchen wall or fridge
- keeping keys, glasses and wallet in the same place, such as a bowl by the door
- keeping important phone numbers by the phone
- setting up direct debits or standing orders for regular bills
- using a pill organiser box for medicines
It can also help to use a diary or calendar, write short notes, and set reminders on a phone or smart speaker.
Staying active
Being active helps both body and mind. The NHS suggests regular exercise that you enjoy, such as:
- walking
- gardening
- tai chi
- dancing
Mental and social activity matter too. The NHS suggests joining groups, going to memory cafés and trying dementia-friendly events, such as some cinema screenings and swimming sessions.
Hobbies you already enjoy, such as music, reading, crafts or puzzles, may need some adjustment over time. That is fine. What matters is that they are enjoyable.
Looking after your health
The NHS recommends:
- eating a balanced diet and drinking plenty of fluids
- getting enough sleep at night, avoiding long daytime naps, and cutting down on caffeine and alcohol in the evening
- regular check-ups for teeth, eyes and hearing
- asking your GP about flu and pneumonia vaccines
Good hearing and sight make it easier to follow conversations and find your way around. Wear glasses and hearing aids if you have them, and keep them clean and working.
Mood
Low mood and anxiety are common after a diagnosis. The NHS says to talk to your GP if you think you may be depressed, as talking treatments may help. Tell someone you trust how you are feeling.
Eating and drinking
The NHS says not drinking enough can increase the risk of urinary tract infections and confusion. Tips include:
- keep a drink within sight and reach
- set regular times for drinks and meals
- try smaller portions of favourite foods
- offer finger foods if cutlery becomes difficult
- keep up regular dental check-ups, as sore teeth or gums can put people off eating
Tell the GP about weight loss, difficulty swallowing or loss of appetite.
Making your home safer
Small changes can reduce confusion and the risk of falls. The NHS suggests:
| Area | Ideas |
|---|---|
| Lighting | Use as much natural light as possible. Add brighter lights on stairs and in the bathroom. Consider sensor lights for night-time |
| Floors | Remove rugs that could trip you. Choose matt flooring, as shiny floors can look wet |
| Colour | Use contrasting colours, for example for toilet seats, grab rails and doors. Avoid bold patterns |
| Finding your way | Label cupboards and doors, especially the toilet. Use pictures of what is inside |
| Mirrors | Cover or remove mirrors if reflections cause distress |
| Noise | Turn off the TV or radio when not in use. Soft furnishings can reduce echo |
| Outdoors | Keep paths flat and even, with handrails, seating and good lighting |
Helpful technology
The NHS lists products that can help, such as:
- clocks that show the day, date and time clearly
- phones and remote controls with large buttons
- medicine reminders and automatic pill dispensers
- smartphone apps for reminders and daily tasks
- see-through cupboard doors, so you can see what is inside
Other useful items may include calendars, door sensors and personal alarms. An occupational therapist can advise on equipment. You can ask for a needs assessment from your council’s adult social services. The NHS suggests doing this early after diagnosis.
Telling people
Deciding who to tell, and when, is personal. The NHS says telling people about your diagnosis, and explaining what you find difficult, can help them support you. Be specific about the help you would like, such as a lift to a group.
You might want to tell:
- close family and friends
- your employer, if you work (see young-onset dementia)
- your bank, so they can offer support
- your pharmacist and dentist
- clubs or groups you belong to
Planning ahead
It is best to plan ahead while you are able to make decisions for yourself. NICE says people should be offered early and ongoing chances to talk about:
- making a Lasting Power of Attorney
- an advance statement about your wishes, beliefs and preferences for future care
- an advance decision to refuse certain treatments
- where you would like to be cared for, and where you would like to die
NICE also says you should be given chances to review and change these decisions later. See legal and money matters.
Driving
A diagnosis does not always mean you must stop driving straight away. Alzheimer’s Society says about one in three people with dementia still drive. The licensing agency will ask for medical information and may ask for a driving assessment before deciding.
Alzheimer’s Society also says:
- you should tell your car insurance company
- if a doctor advises you to stop driving, you must follow this advice, even while waiting for a decision
- dementia will eventually affect the skills needed to drive safely, so everyone will need to stop at some point
Planning for this early can make it easier. Think about other ways to get around, such as lifts from family, community transport, buses, taxis or a bus pass.
Staying connected
Loneliness can make things harder. Try to keep in touch with friends, join a local group or try a peer support forum. See support and helplines.
If you have a partner or family member who helps you, they may want to read caring for someone.