Living well with dementia

living well with dementia

It is important to know that there is support available to help you or your loved one live well with dementia. Your local Alzheimers organisation offers a range of services to help you in the way that you need.

 

 

 

This page provides information and advice for people with a dementia diagnosis. 

 

For information on supporting someone with dementia click here.


Everyone's experience with dementia is different. That's because everyone's brain is different and because the different types of dementia affect the brain differently. Whatever your experience, it is important to know that with help, you can still live well with a diagnosis of dementia and continue doing the things you enjoy doing.

 managing your day

You might be finding it harder to do some things that you once did easily.  Cooking, managing your money and even dressing  are examples of things that may become more difficult and take longer then they used to.

You can help manage this by:

  • giving yourself more time – and not letting others hurry you
  • taking a break for a while if something is too difficult
  • breaking a task down into smaller steps, then taking it one step at a time
  • asking someone to help you with difficult tasks, or just the difficult bits of a task.

 communication

Everyone’s experience with dementia is different. That’s because everyone’s brains are different and because there are many forms of dementia, each affecting the brain in different ways. But communication difficulties are a significant part of living with dementia for everyone.

As part of your dementia, you may have difficulty:

  • finding the right words, or get words mixed up
  • understanding what other people are saying to you, or you might understand only part of it
  • reading and writing.

Your family, friends and whānau may notice that:

  • while you are speaking fluently, you are not making sense
  • you lose the normal social conventions of conversation and may interrupt or ignore people
  • you have more difficulty expressing what you’re feeling.

Remember, there is more to communication than words:

  • 55% is body language
  • 38% is the tone and pitch of our voice
  • 7% is the words we use.

Losing the ability to easily communicate can be very frustrating and may lead to increased tension and feelings of increasing inadequacy and loss of confidence.

If you are finding communicating difficult:

  • take your time
  • tell people you have a problem with thinking, communicating and remembering
  • if you don’t understand what someone says, ask them to repeat it
  • remember that it is okay to ask something over and over again
  • if too many people or too much noise bothers you, find a quiet place. Wearing ear plugs in noisy environments, such as shopping malls, may help
  • if you lose a thought, let it go – it’s okay if you forget it and it might come back to you later
  • think about what else might be causing you trouble – have your eyesight and hearing checked as eyeglasses and hearing aids may help.

 finding your way

People with dementia can benefit from continuing to enjoy walking, however for some there is an increased risk of getting lost. There may be days when things that are usually familiar become unfamiliar.

Some strategies to make walking safer include:

  • taking the same route each time you go for a walk
  • trying not to be afraid ask for help when you need it
  • explaining to people that you have a memory problem and need some help
  • carrying identification with you at all times that includes your name, address, phone number and emergency contacts – make sure the information is kept up to date.
  • considering using locator technology that can monitor and locate people quickly.

 managing your health

As with any chronic health condition, it’s important to look after your health. 

You can do this by:

  • staying active and doing regular exercise (if your doctor says it’s okay)
  • eating a balanced diet
  • making sure you have time to relax each day
  • resting when you are tired
  • limiting how much alcohol you drink – for some people alcohol makes memory problems worse
  • having a regular health check-up with your GP
  • taking your medication as prescribed – talk to your pharmacist about putting your medicines in a blister pack if you’re having trouble remembering what to take when
  • keeping active and involved with your social activities and your hobbies. Rather than giving up things you love to do, see if you can modify them to suit your abilities.

 maintaining your spirituality

‘Spirituality’ can mean more than religion or going to church – it can relate to anything that gives meaning or brings peace to our lives.

For many people, their spiritual faith is an important strength as they learn to live with dementia. Whether that comes from maintaining religious involvement, meditation, appreciating art, enjoying a sunset, walking along a beach, or spending time with family, friends and whānau, it’s important to take time to keep enjoying whatever helps you feel calm and at peace.

 keep laughing

Sharing your sense of humour is an excellent way of releasing tension, as well as enjoying lighter moments with friends and family. Don’t forget to laugh.

 driving

Being able to drive is a big part of our independence. Knowing you have to stop, or being recommended that you stop, may make you feel angry or frustrated.

But dementia affects your ability to find your way around, judge distances and react quickly. It also affects handeye co-ordination. All this affects driving ability.

A diagnosis doesn’t mean you have to give up driving straight away, but do take notice of any changes in your driving especially if you have:

  • got lost in familiar areas
  • confused left and right
  • been finding it harder to make driving decisions – at traffic lights, intersections, while changing lanes
  • had difficulty remembering what traffic lights mean
  • been driving more slowly, and on the wrong side of the road
  • been taking longer to react
  • been breaking traffic laws because you can’t remember the right thing to do
  • been using the accelerator and brake at the same time, or been braking inappropriately
  • found damage to your car that you can’t explain.

If you or your family have noticed any of these changes it might be time to give up driving for your own safety and the safety of others. If you’re not sure, you can talk to your doctor about a driving test to assess your ability.

Giving up your car is hard but there are transport alternatives. You can use public transport (free off-peak travel if you have a SuperGold card), or you might qualify for subsidised taxis. You can always walk, if you’re able, and there may be community transport options. Your local Alzheimers organisation can help you.

 working

If you have been diagnosed with dementia and are still working, you may need to start making decisions about changing how you work. It’s possible the symptoms of your condition have already started affecting your work.

You may have:

  • difficulty communicating your thoughts to colleagues or clients
  • trouble concentrating for as long as you used to
  • forgotten meetings or appointments
  • difficulty managing several tasks at one time
  • problems with larger groups, so you prefer to work alone
  • lost confidence in your work abilities
  • felt uncertain about making important decisions.

The key is to take control of what’s happening early, to plan, and to be realistic. Seek guidance and support from the start.  Your family/whanau, friends, and employer may be able to help you, but also think about approaching:

  • your GP or specialist
  • your union or professional registration body
  • your local Alzheimers organisation
  • legal and financial advisors
  • a counsellor or social worker.

These people can help you think things through and support you to make the decisions you need to make.

 continuing to work

It’s good to keep working if you can. Not only does work keep you connected to other people, it also exercises the brain.

If you decide to keep working for as long as you feel able to, here are some suggestions:

  • Talk to your employer about your diagnosis. This is a very big step for most people, so think about what to say and how much to tell. Using a family, friend or whānau member for a rehearsal can be very useful. You might want to take someone with you to help explain dementia and what it means for you.
  • Discuss the possibility of changing aspects of your job to make things easier for you.
  • Think about who else in your workplace needs to know about your diagnosis. This might include clients as well as co-workers. It can be helpful to have one or two trusted people to support you in your workplace.
  • Start planning for your future – think about at what point you will decide the time is right to leave work.

Telling an employer about your condition isn’t easy and everyone reacts in different ways, which are not always predictable. Before you tell your employer, you may want to:

  • familiarise yourself with relevant antidiscrimination legislation
  • know your employment conditions, especially your sick leave entitlement.

 managing changes at work

Any problems you are having at work are probably because of the changes going on in your brain. While you can’t control the changes, you can control how you manage them.

Sometimes simple coping strategies or changes in the environment can help you at work. Like anyone else with a chronic medical condition, you have a right to special consideration at work.

Think about what might help you keep working as long as you can – sometimes just reducing your working hours can help a lot.

 leaving work

At some point you will need to stop working. If you haven’t already planned for when that day might be, try not to make a hurried or rushed decision.

Take the time to make sure you know all about your rights and benefits. This can be a very complex area, so make sure you get good advice.

Before you decide to leave work, find out about:

  • your superannuation policy and entitlements
  • sick leave or long-service leave entitlements
  • government benefits you may be entitled to, such as national superannuation, disability or sickness benefits
  • income protection insurance or other insurances that may have a disability component.

Depending on your situation, you can get help from:

Deciding to stop work is a big decision, so take your time. Discuss it with your family, friends and whānau – after all, any decisions you make affects them too.


As well as delaing with the difficulties you are facing now, it's important to be prepared for the future. See our advice on planning ahead


We also have a range of useful booklets and fact sheets available to download or order.

 

For information and support, contact your local Alzheimers organisationThere are also other organisations available to help you -  find them on our useful links page.