Taking care of a loved one with Alzheimer's disease or dementia can severely test the vows you made to one another many moons ago. It is a very difficult and strenuous job that inevitably causes pain and grief for the person you once knew - before dementia came crashing into your lives.
However, whilst loving and caring for someone with dementia can be hard, you will find that it can be incredibly rewarding if you remember a few important things. So, in the spirit of Valentine's Day (14th February), here is what you should consider when your partner has dementia:
Dementia does not define who they are.
Being diagnosed with Alzheimer's disease
or another form of dementia is devastating and life-changing both for the patient and for their loved ones, but it is crucial to remember that dementia does not become that person. You knew who they were before their diagnosis, and it is important to hold on to those memories of who they really are.
Dementia is responsible for their mood swings and personality changes.
Dementia is a physical disease that causes a build-up of proteins in the brain. These proteins then form plaques that kill nerve cells and block signals / connections in the brain. This causes significant loss and damage of brain tissue, alongside the production of chemicals because important messages are no longer being delivered.
All of this is responsible for the mood swings and personality changes you see in your partner - it is imperative to remember that it is the disease that is progressing and causing this.
Learn as much as you can about dementia.
Educating yourself about dementia as much as you possibly can means that you will be able to better understand what is happening to your loved one and why. This means that you can rationalise the situation and empathise with your partner, as well as preparing for the future.
Love your partner for who they are now.
Watching the person you've spent your life with change before your very eyes is a devastating experience, but it is essential that you learn to love your partner with dementia (even as you hold on to the memories of what they were like before). Once you have grieved for the loss of the person you loved - and learned to love them anew - accepting the fact that you may not be able to 'reach' the person they once were becomes easier. Former Alzheimer's caregiver Ellen Woodward Potts
states, "The key to coming to terms with this loss is to realise that the human being you have known and loved is still there, but their persona has been masked by Alzheimer's."
Expect the unexpected.
It is important to be realistic in your expectations for yourself and your loved one. Make sure the goals you set are realistic, and don't get wound up if they are not met. For example, if an activity your partner used to love now causes a negative response then accept this and try something different. Remember, it is the progression of the disease that is causing their behaviour.
Learn to let things go.
Learning to let things go when your partner suffers from dementia is one of the most challenging and frustrating aspects of the disease, but it is a crucial one. Their mood swings, personality changes and memory loss will be caused by the progression of plaque build-up in their brain, so make sure you are not arguing with them over a forgotten memory or the way they are behaving as it will only upset the pair of you. Be willing to take the high ground and let it go.
Listen to your own limitations.
Those with dementia and Alzheimer's disease may require a range of home care
, from specialist domiciliary care
to palliative care
. This is a huge responsibility for professional caregivers, let alone family members who also act as caregivers. Due to the complex needs
and characteristics of dementia, the disease costs the UK over £26 billion per year, and there are currently over 670,000 carers in the UK. There is nothing wrong with asking for help or additional support when you feel overwhelmed.
Make sure you rely on friends and family members if necessary. You're doing everything imaginable - and more - to be there for your partner, and it's important to remember that your support network will be there for you too. Understand your own emotional and physical limitations; it takes a strong person to do all of this alone, but it takes an even stronger person to ask for help when they need it.
Explore methods of communication.
Communication is something that the majority of dementia patients struggle with to one degree or another, but poetry, dance, music, arts and crafts are all good ways to connect with your partner. These methods are especially helpful when your loved one is no longer able to verbally communicate. Remember, a gentle touch on the arm and a kind approach will also show them just how loved they still are.
Dementia affects around 850,000 people in the UK alone, and this number is expected to rise to 1,142,677 by 2025. Alzheimer's disease is the most common form of dementia, but no two people living with dementia are the same. If you would like advice on how to care for a family member with dementia, please do not hesitate to get in touch.