The Emotional Impact of Dementia
Beth Britton is a leading campaigner, consultant, writer and blogger on ageing, health, social care and dementia.
Everyone who has been diagnosed with dementia, or who has a family member who has been diagnosed, has a story to tell of the moment they heard that news.
I’ve listened to people describe relief (“I finally knew what’s wrong”), uncontrollable tearfulness (“I sat in the hospital car park with my wife and we cried and cried until we could cry no more”), a matter-of-fact approach (“Got to get on with life”), anger (“Why has this happened to me?”), complete denial (“The doctor is wrong”) and just about every other emotion you can imagine.
People’s emotional responses are often linked to other elements in their life. For example, a younger person diagnosed with dementia may be fearful of rapidly progressing symptoms, giving up work and leaving a young family behind.
An older person may be worried about not accomplishing the things that they have always wanted to do, or losing their home to pay for dementia care. And just about everyone will, at some point, fast forward in their mind to a ‘worst case scenario’ when they might be immobile, incontinent and nearing the end of their life, even if at the time they are having those thoughts they are relatively well, active and able.
All of these emotions are a normal and natural part of how we react as human beings. I remember when I learnt about my dad’s diagnosis of vascular dementia. Dad had been admitted to hospital following a stroke, and we’d visited him daily. One day we turned up as normal, but dad’s bed was empty.
Not an ideal example of how to ‘break bad news’, but aside from the rather rudimentary dialogue, emotionally my world had been turned upside down. Many people affected by dementia report experiencing emotional responses that range from denial, lack of understanding and fear, through to a sense of loss and guilt, and at one time or another we experienced all of these as a family.
Denial is often one of the earliest emotional responses to dementia. It can cause a delay in seeking a diagnosis, and remain long after someone has been diagnosed. In some ways denial is a way of trying to cushion ourselves - few people actively want to confront the prospect of themselves or their family member having a terminal health condition.
Alleviating denial often comes from giving yourself time to come to terms with what is happening, so you are able to see factual information as truthful rather than inaccurate. For some people, however, denial remains ever present throughout theirs or their family member’s life with dementia, and for those around a person who is trying to cope with longer-term denial it becomes about minimizing confrontation or distress.
Lack of understanding
Lack of understanding is often what fuels denial - not fully understanding what dementia is, or believing stigmatizing views about dementia, can be behind this. Alleviating a lack of understanding can be a simple as actively researching dementia through the many online channels, as well as initiatives like Dementia Friends and Dementia Friendly Communities.
Accessing peer support groups – such as DEEP, Dementia Alliance International and TIDE – or attending dementia groups or events that are local to you may also help. Listening to, or reading about, the first-hand experiences of other people who are living with dementia or have a family member with dementia can be incredibly powerful and life affirming.
Fear is perhaps the most difficult emotional response to cope with, because it can make you feel helpless and no longer in control. Fear is linked to dementia in so many different ways, from the fears people have when they first notice symptoms, through to fears about what the future holds and, as a person’s dementia progresses, fears about what might happen next.
Alleviating fear in this context is often achieved through good early planning for the care and support needs of the person with dementia, including thinking about advanced care plans and Power of Attorney, as well as knowing that flexible care options are available in the future. If you are able to adopt an approach of living in the moment and making the most of the here and now that can also help.
A sense of loss
A sense of loss is strongly linked to dementia because many people report feeling a living bereavement, where you grieve for the person even though they are still very much alive. This is often due to difficulties communicating with the person, familiar faces no longer being recognized or changes in behaviour.
Alleviating this sense of loss is something very personal to each individual, but utilizing ways to connect with the person who has dementia, through life story work, music, and shared interests can help families to find a mutual bond again.
Guilt is associated with dementia through the decisions people often have to make about the care of a relative. If you are told that your family member needs to go into a care home, many families feel immense guilt at being unable to care for the person themselves.
This is particularly true in cases of family carer breakdown, where the person caring for their loved one can no longer cope alone. In this respect, live-in care can help to alleviate the emotional turmoil through good preventative care, helping to minimise hospital admissions and support family carers, and by removing the need for the person to go into a care home.
Sources of support
Whatever emotions you are going through, knowing where to go for support is vitally important in ensuring that the emotions you are feeling don’t become unmanageable for you or impact upon family relationships.
by Beth Britton, Social Care Campaigner