Here are some phrases suggested by people involved in our research study into experiences of young onset dementia (before 65 years).
You may find it helpful to reflect on these from time to time.
- Be kind to yourself.
- You are a person too. How are “you”?
- Remember it is the illness and not your loved one when
- difficult situations develop.
- You’re not alone.
- You can’t be perfect all the time.
- Do not feel guilty – you are allowed to feel angry, upset and ask “why me”.
- It’s alright to laugh with the person who has dementia. You are laughing at the condition not the person.
- Taking care of yourself is an important starting point to help the person with dementia. Take time out together.
- If it works for you then go with it. You are the expert on the person you are caring for but bear in mind people and circumstances can change.
- It’s alright to cry. You can feel better having a cry.
- You do a fantastic job. Give yourself a pat on the back.
- Don’t take things personally.
- This person’s daily life would be very different if it weren’t for you.
- Find something to smile about and share that with another.
- Don’t feel bad if you get it wrong/feel you need time out
- Tomorrow is another day.
- We all need help and encouragement so believe in
- yourself – take your time.
- Join a group where you can share and get support.
- Do join groups for your loved one and also for YOURSELF – there will come a time when YOU need these friends you have made.
- Friends are important – you can often say things to a friend that you wouldn’t say to family.
- Ask for help before you crack. We all need help from time to time, don’t be afraid to ask!
- Be encouraged to talk to someone about anything personal to help lighten the load and share how you are feeling.
- Take time off.
- It’s ok to step away from your situation (Respite).
Download leaflet YOD_3-Positive Statements
Things that prompted others to wonder if they had dementia and to get medical advice
These are some of the things experienced by people we spoke to in our research study that led them to question if they had young onset dementia (before the age of 65 years). One or more of the things listed here prompted people to seek medical advice. As part of our research study, people living with dementia and their family carers wanted to share these things in a leaflet.
- Start filling up the washing up bowl and walk away and forget about it.
- Forget about food in the oven.
- Not knowing the names of people you’ve worked with for years.
- Unable to find a place you have been visiting for many years.
- Panicking about travelling to new places.
- Not being able to remember the way home.
- Getting disorientated when travelling a different route.
- Struggling to fill in forms.
- Becoming distracted and forgetting to go back to what you were doing.
- Not sleeping well.
- Asking the same question repeatedly.
- Calling people you know well by the wrong name.
- Constantly losing everyday items like your handbag or purse/wallet.
- Getting irritated by other people more than usual.
- Not being able to find the right word.
- Going to the shops then forgetting what you’re supposed to buy.
- Not being able to multitask.
- Double booking appointments.
- Not being able to count out money.
- Struggling to read.
- Struggling to manage finances.
- Unable to match the wallpaper patterns when decorating.
- Having trouble following the car’s satellite navigation system.
- Going in the wrong direction.
- Forgetting the right order of steps in a procedure.
- Forgetting to take medication and sequences of events.
- Use of wrong or inappropriate words in conversation.
- Getting the wrong bus continuously.
- Trying to get into the wrong car.
- Forgetting to document important things at work.
Download leaflet YOD_2-Early Warning Signs
These are some suggestions made by people we spoke to in our research study into experiences of young onset dementia (before the age of 65 years). You may like to try or adapt some of them to help you manage life with young onset dementia. As part of our study, people living with dementia and their family carers wanted to share these ideas in a leaflet.
- Get support from other people in your situation.
- Have a big diary for the person living with dementia to use.
- Allow yourself to take time out and pamper yourself.
- Put yourself first, sometimes.
- Be aware that you cannot control the illness.
- You can’t wrap them up in cotton wool so let the person living with
- dementia do what they want to do within reason.
- Listen to music or singing may help.
- You’ve got to look after yourself.
- Try a meditation and mindfulness course. Live in the moment.
- Accept when you do need help.
- Keep yourself in a routine with the person living with dementia.
- Get as much information as you can about what’s out there that can help you.
- You have to remember to let things go and just let things be.
- Remember it’s the illness talking when hurtful things are said.
- You don’t have to be perfect all the time.
- Don’t wait until breaking point.
- It’s OK to get it wrong.
- Do stuff that the person living with dementia really enjoys.
- It helps if you can build up your confidence as a carer.
People living with dementia:
Keep your keys in your shoe because as soon as you put your shoe on your keys are there.
- Keep things in the same place.
- Keep routines.
- Put labels on your cupboards so you know what’s inside.
- Use a waterproof marker to write S and C on shampoo and conditioner bottles.
- Use a Dictaphone to record what you have to do the next day.
- Have a pot/glass with your toothpaste and toothbrush in.
- Use a big diary and visitors can record when they’ve been there, especially if carers have visited.
- Calendars with bigger boxes to write in.
- Use audiobooks instead of reading.
- A sign on the door reminding yourself to lock the door.
- Use a blister pack/tablet dispensing system.
- Use a watch that alarms you to take your medication.
- Have a tracking device so your carer knows where you are by using their phone.
- If you’re having a bad day with ‘brain fog’, put the radio on or some music and just relax.
- Let the people you live with know you’re having a bad day.
- Exercise even if just walking round the block.
- Get some social support and join a group.
- Remember what you CAN do.
- Structure your day.
- Talk to your peers.
- Take one day at a time.
Download leaflet YOD_1-Coping Strategies
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