Living with dementia is a difficult experience for everyone involved. It can impact lives in completely unpredictable ways that cannot be foreseen or prepared for.
Whatever form it takes and however it manifests itself, nobody should feel isolated or hopeless and taking these three key steps will set the right foundation for managing the situation in a healthy and positive manner.
1. Keep everyone involved in normal life as much as possible
Remember that dementia is a chronic condition that needs to be managed. Sure you will need to make adjustments and adapt to new challenges, but remember that the person inside is still the same.
Support should focus on what you can do daily to maintain your loved one’s independence and sense of self. If your loved one enjoys gardening, encourage them to keep doing that however they can. If you’re going shopping for them, don’t leave them behind.
Including the person in decisions and activities will make them feel valued and supported. If they seem confused about doing a task, don’t do it for them, do it with them.
As the condition progresses, you’ll need to adapt to changes in behaviour as the person is no longer able to react in the way that we would have previously expected.
Aggressive behaviours like anger, becoming uncooperative and refusing to do things are likely signs that they are confused, frustrated by the loss of control, or have unmet needs they can’t express. If someone won’t get dressed, try showing them a few options instead of just asking them what they want to wear. Focussing more on non-verbal communication will help too.
2. Talk openly about dementia and find solutions together
A dementia diagnosis will have a knock on effect on family members and friends. Those who are unsure of what to do or find the experience unsettling very often tend to reduce contact and leave the person living with dementia isolated. But talking openly and unashamedly about having dementia will help everyone feel more relaxed about dealing with difficult situations and more likely to lend their support when you need it.
Good communication is crucial from the beginning to help you prepare for the road ahead. Discuss what you are concerned about, make sure everyone feels comfortable asking questions, and ask everyone to be open about how they can help and what support they need.
Personal relationships and social environment shape the experience of a person living with dementia, so find ways to stay connected with family and friends. Think about how the person can remain part of everyone’s life and don’t let their reduced ability be the end of life-long relationships.
Even when we can’t think clearly, we still remember feelings and emotions so simply holding hands, hugging for a while or giving a warm smile can be the best approach when the dementia is causing distress and confusion.
3. Don’t get overwhelmed, remember you’re not alone
Caring for a loved one with dementia is a big job that you shouldn’t do alone. If your loved one had diabetes you’d never consider looking after them without seeing a doctor and getting professional help.
Build a support system which includes family, support groups, and trained carers who understand the condition. Take advice, learn from others’ experiences and have back-up for when you find yourself struggling.
Burnout and depression are common side-effects of caring for a loved one with dementia due to the emotional and physical stress of the condition so don’t forget you have to look after yourself too. Sharing the responsibility so you can have time to focus on yourself or the other priorities in your life is the key to making life as happy as possible for everyone in the long term.
When things get tough, remember people with dementia aren’t giving you a hard time they’re having a hard time. The best we can do is to stay strong for them.
At the CareCompany we have experience with all aspects and stages of living with dementia and we can be there for you and your family on this difficult journey. Our services are centered on the person in a way that enhances their wellbeing, treats them as the individuals they still are and meets the specific needs of each situation differently.