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Living with dementia

Even if you’ve suspected for some time that something is amiss, being told you have dementia can be an upsetting and uncertain time. Dementia can affect many aspects of daily living, not only for the person who has the condition but also for their friends and family. There’s a lot to come to terms with, not least the fear of losing independence as you come to rely more on those around you for help and support.

As your condition progresses, you may need help to cope at home and eventually you may need the facilities offered by residential care in a nursing home.  It’s natural to feel worried about what will happen to you, but there’s much you can do in the early stages of dementia that can help make life easier, both in the short- and long-term. And you’re not alone – dementia is such a common condition that there are bound to be others living near you with similar issues. Increasingly, local services are springing up all over London to help people with dementia and their carers to live life to the full. These include services run by the NHS, social services and voluntary organisations providing advice, support and activities to suit you.

Living at home

Many people with dementia prefer to remain independent and stay in the familiarity of their own home. As the condition progresses, you may find you need more support from your family, friends and neighbours to carry out your daily activities, such as doing the housework or going shopping.

There are several things you can do to help while living at home:

Adapt your day-to-day living

Simple steps for day-to-day living include:

  • putting labels on cupboards or drawers
  • writing notes to remind you of important things and keeping them in a place you can’t miss, such as on the fridge door
  • keeping useful phone numbers by the phone, and/or programming them into your phone
  • writing down things you want to remember in a diary

See more practical tips at NHS Choices.

Over time, you may also need to adapt your home to make it easier to live safely and independently. A number of gadgets are available to help, including

  • safety devices, such as gas detectors and smoke alarms
  • locator devices to help find commonly mislaid items such as keys
  • a flood detector in case you forget to turn off the taps in the bathroom
  • bed sensor devices which can alert the carer if you get up in the night and need help going to the bathroom
  • a GPS tracking device to help your carer find you if you get lost while out and about

For more on devices, see assistive technology at the Alzheimer’s Society.

Keep active

Staying physically active and enjoying interests are important for people living with dementia – not only are they fun but they can also be stimulating and help maintain physical fitness. Some experts believe that physical exercise has particular benefits for people with vascular dementia as the activity can improve blood circulation.

Enjoy a social life

Keeping up an active social life can make a big difference to someone with dementia. It can prevent feelings of isolation, be stimulating and help to keep you active. As well as keeping up with your old friends, you may like to make new friends who are in a similar situation to you. Across London there are local groups of people with dementia and their families. You may find it useful to join your local group.

Tell your family

It’s important to tell your family and friends that you have dementia so they understand what is happening. They will then be able to cope better as your symptoms progress, for example, if you can’t always remember who they are. Some of your friends may find it hard to talk to you about dementia – often they would like to help but don’t want to seem as if they’re interfering. Tell them how they can help – even if in some cases it’s only to keep in touch.

People often wonder what to tell children about dementia. It’s natural to try to protect children from unpleasant situations but they tend to be very sensitive to picking up when something is amiss. Telling them that you have an illness and that it may cause you to do or say unexpected things can be reassuring to children. You may find they’re very good at taking it in their stride and offering practical help in their own way.

Expect changes in close relationships

Dementia is likely to affect many aspects of your relationship with your partner as it progresses. For example, it can affect sexual feelings and desires – a person with dementia may have more or less interest in sex, their sexual inhibitions and behaviour may change. These changes may be distressing for you or your partner. It may be helpful to ask your GP to put you in touch with a suitable counsellor who can offer advice and support.

For more on sexual relationships see the Alzheimer’s Society leaflet.

Sleep well

People with dementia often sleep restlessly and wake up during the night. This can affect concentration and cause sleepiness during the day – and this problem may be exacerbated if you’re taking certain medications. Here are some simple steps you can take to help you into a better sleep routine:

  • Take some gentle exercise – at the right level for you
  • Try not to nap during the day
  • Don’t eat late at night
  • Avoid caffeine or alcohol in the evening. Stop drinking tea or coffee by mid-afternoon. If you’d like a hot drink in the evening, make it a milky one or a caffeine-free herbal tea.

For some people with dementia, careful use of sleeping tablets may be appropriate. Talk to your doctor to see if this applies to you.

Adjust your work

If you work, you may wish to discuss with your doctor the effects dementia has on your work. Tell your employer when you’re ready – they will need to consider whether they need to make changes to your work. If you decide to leave work, get advice from your pension adviser before you leave, and about any social security benefits you might be entitled to – you can get advice from the disability employment advisor at your local job centre, your trade union or your local Citizens Advice Bureau (CAB).