Supporting a friend or relative through any illness can be an opportunity to build a closer and more satisfying relationship. However, it can also be hard work and frustrating at times. And because of the nature of the disease, caring for someone with dementia can be particularly difficult.
“When a loved one is diagnosed with dementia, it’s normal for those close to them to feel anxiety, fear, grief and even anger at the unfairness of it all,” says AXA Health’s Consultant Psychologist, Dr Mark Winwood.
The rate at which the disease progresses can vary a lot. And while it’s a it’s a diagnostic criterion that symptoms should be severe enough to require help with activities of daily living, with the right support a person with dementia may be able to function independently on some levels for a considerable time after diagnosis. At some point though, dementia will impact their work, social life and their relationships with family and friends. "The emotional upset, pain and sense of loss can be acute.”
Coping tips for family and friends
It can be hard to see some of the changes or difficulties that a friend, loved one or family member is experiencing as a result of dementia. Many people with the condition try to hide the problems they’re having because they’re afraid that people will treat them differently as a result. It can be frustrating not to be able to help a person with dementia more – but sticking by them and giving them your support and reassurance will mean a huge amount.
- Listen to the advice of professionals and try to get an understanding about what dementia is and how it might affect the person in the future.
- Discuss the wishes of the person with dementia and support them to make decisions about their future care.
- If the person is happy for you to do so, let other people know about their diagnosis so they understand what’s going on. Dementia is very common and other people may already have had their own experiences in their own families or friend groups.
- Be positive and make the most of the time you have together and with friends and family.
- Where conversation is difficult due to memory issues, try using family photos or favourite mementos to trigger memories. Dementia usually affects short term memories before affecting long term ones, so remembering events from long ago can be easier for someone with dementia than remembering what they had for lunch.
- If a person repeats something they said a few minutes ago or doesn’t appear to have remembered something, telling them that they’re being forgetful or saying, ‘Don’t you remember?’ isn’t likely to help. More likely it will just make them feel embarrassed and confused. Instead, just roll with it and keep the conversation flowing. Also try not to ask too many questions all at once as this may become overwhelming for the person.
“As the condition progresses,” says Mark, “it may become very hard to cope with the changes and challenges you face, but try not to be critical or bossy." It can be very difficult when someone close to you no longer recognises you or remembers your name, but try to be as patient and compassionate as you can – and don’t be too hard on yourself if you don’t always manage this.
Always remember that you’re dealing with an adult who has a lifetime of experiences and achievements, who expects to always have a say over what happens to them, and who needs to be treated with dignity – never patronised, ignored or treated like a small child, even though they may struggle with what seem like relatively simple tasks. It's normal for a spouse or carer to feel angry and upset, so never be frightened to ask for help yourself.
Take care of yourself
It’s important for all carers to pay attention to their own needs first. To help you keep your mental and physical health strong, Mark has these tips for those caring for a loved one with dementia.
- Speak up
You may be hesitant to speak to others if your loved one upsets you or lets you down. However, honest communication may help you to cope with the changes that are happening. So, don’t suffer in silence. Gently talk about how you’re feeling with a friend, family member or professional.
- Set boundaries
To avoid burnout and possibly even resentment, think about your limits in terms of what you are able to do. Be realistic and set achievable tasks. You might need to look at professional carers to help with certain tasks, such as personal care.
- Stay on track with your own life
While changes in your daily routine may be unavoidable while caring for your friend or relative, do your best to keep appointments and plans with your friends. It is important to maintain your own support network as much as you can.
- Get help from others
Don’t be afraid to accept help from others. Joining a support group, talking to a counsellor or GP, or confiding in a trusted friend will help you get through this tough time. Talk to other carers. When appropriate, make use of respite care or other care services. Understanding your emotions and what you’re feeling can help you put things into perspective and feel less stressed and less isolated.
Alzheimer’s Society, the UK’s leading dementia charity are one of AXA UK’s chosen charity partners. Through our partnership we will be raising money to fund vital research which was forced to stall because of the pandemic. We are now helping dementia research get back on track by supporting 5 incredible projects funded by some of the biggest names in the field.
The content in this article has been developed with Alzheimer’s Society. For further information and to find out how you can access support you can visit alzheimers.org.uk. To find out more about Corporate Responsibility at AXA UK, visit our CR page here.
Alzheimer’s Society –the UK’s leading dementia charity provides support through its Dementia Connect service for people living with dementia.www.alzheimers.org.uk
Dementia UK - Specialist support to families facing dementia – www.dementiauk.org
National Dementia Action Alliance – We are the alliance for organisations across England to connect, share best practice and take action on dementia.
NHS Conditions - About dementia - NHS (www.nhs.uk)
Age UK - www.ageuk.org.uk
Carers UK - www.carersuk.org
Citizens Advice Bureau - www.citizensadvice.org.uk