Dealing with a diagnosis of dementia is a difficult process for both the person being diagnosed, as well as their families and friends. When someone receives a diagnosis of dementia, they have to face the unknown, the fact that there is no cure available, and the knowledge that they may lose their own identity. It’s a scary and difficult situation to be in, and people react in many different ways to receiving this diagnosis. For some a diagnosis may be the long awaited explanation of what has been happening, whereas for others receiving the diagnosis comes as a complete shock.
You are about to embark on a journey with the person you love, so it is important that you understand what they are going through, as much as you understand yourself and the challenges that you may face.
“I believe it all begins with us, when each one of us, either as a patient or a caregiver is confronted with the reality of this disease. In that pain and sadness, we are faced with the acceptance or denial of it. If we don’t accept it, we allow denial a foothold, and there is simply no time for denial with this disease. Alzheimer’s does not wait for us to accept it.”
Allow yourself time to grieve and mourn over current and future losses. Know that the sooner you accept the diagnosis of dementia, the sooner you will be able to provide help. Take time to absorb information about the disease before learning more. You need to adjust to the “new normal”. It is not unusual for care partners to be the first people to seek information about the disease soon after diagnosis. Knowing what to expect, having access to resources and support available can be empowering. It can lead to an increased commitment to your partner and determination to get through this together.
Support the person with dementia in their process of acceptance. Patience, flexibility and open communication can provide reassurance. Show them that they are not alone and that you are in this together. Give them time to feel sad about how their identity may change as a result of the diagnosis, and allow them to go through the various stages of grief. Emphasise the roles and responsibilities that are still significant to the individual’s identity, and encourage them to speak to a trusted friend, minister or professional counsellor to talk through difficult emotions.
Denial is sometimes used as a way to cope by both those with dementia, as well as their carers. It can serve as protections against a reality, which is too hard to deal with at the time. If someone is in denial, it is best to respect their needs and be ready to support them, when they are able to receive your support.
Know that part of accepting the diagnosis is understanding that the person with dementia will change. Try to remember that changes in behaviour or personality are directly or indirectly caused by the disease- do not blame the person with dementia. Learn to accept changes whilst appreciating aspects of the person’s behaviour and character that are still familiar to you.
To support them, try to be sensitive to their emotions, reassure them and confirm that you will be there for them. Pay attention to non-verbal signs of emotions, and help them identify their emotions. Allow time for your comments to sink in, and wait for their reaction. Acknowledge their feelings. Telling someone that there is no need to feel sad or worried does not help. It will make it seem like you do not understand the person with dementia.
You will face a great deal of uncertainty, and the person with dementia may ask themselves “Who am I”. Find ways to engage in activities that bring meaning and purpose to their life – explore a skill, try new activities, volunteer, and encourage them to connect with others.
Similarly, to the person with dementia, you do not have to deal with this situation on your own. Once you have identified trusted friends and family members, be specific about how you would like to engage their support. Would you like their assistance with transportation, for medical appointments or help with social outings? Or would you just like someone to talk to? There are also many online forums, support groups, and community programs that you can access at any time. Although people will react differently and it can test relationships. It can be empowering to share the diagnosis. You will likely be surprised by the amount of support you receive!
Our app, CogniCare, has a wide range of resources that caregivers could find very useful. These resources have been curated from organisations and institutes from around the world that specialise in dementia care. You can use this information and allow others to help you and your loved one go through this difficult journey together.