If only I’d known then what I know now! Surely an all too familiar cry for those of use who’ve cared for an elderly relative. When my mother became ill with Alzheimer’s, I was desperate for information and attended support groups, but valuable as they are they are mainly reactive, so nothing really prepared me for what was to come. I would have been much better equipped to cope and to provide far better care if I’d had access to the proactive professional training which I have received since.

“Carers can’t care” is a controversial statement, but it highlights the fact that carers aren’t given the information they need to understand the illness, its symptoms, the necessary coping strategies and how to navigate their way around the health and social services labyrinth. Not only this but the carers can also become remiss about their own health and stress can become a serious problem. Instead of being properly informed and prepared in the first place, it’s only when the stress builds up and the family carer is at breaking point that they ask themselves: how do I deal with this? How can I cope? Trying to care while shrouded in ignorance without the right tools or understanding is a guaranteed path to stress and conflict for all involved, not just the carer. For example, trying to re-orientate an elderly person who is confused and believes night is day and day is night is a path destined for a collision of wills, anger and frustration. Yet there are strategies for dealing with these out-of-synch realities. Also, how can we avoid eroding an elderly person’s self-esteem and dignities, if we constantly tell them they are mistaken, wrong or not able to do something? It would make anyone fume with rage.

I had research conducted into this, exploring the impact of dementia education for family carers who are looking after an elderly person with dementia in their own home. What I found as initial results were that carers did not contemplate or seek out education, though those few who did receive the training wondered how they had coped beforehand. I now educate family carers as part of my profession and witness first-hand how much of a difference it makes to the standard of care. One woman, who had not had much interaction or spoken to her mother for nearly six years, told me that she now understood what was going on and could now do more to help her mother. You can read my research here at Care Matters.

The research suggests that providing education to family carers reduces stress related physical and mental illnesses and considering that more than 700,000 family carers suffer stress-related illnesses there’s much that has to be done to alleviate this. Carers are trying their best but will remain constantly in the dark if they remain without help or education as a carer. Is it really that carers don’t care – unlikely! Is it denial that is the barrier, facing up to the reality of the illness — possibly! But if we are going to provide the right care and be “caring”, we need to understand and see the illness from the other person’s point of view, see behind their pain, anger and fear.

I know for a fact, from both my own experience and others whose care paths I have been involved with formulating, that the education we have provided both to professionals and family carers has had a profound impact on those who can’t care because they don’t know. Knowing pragmatic solutions to behavioural symptoms or how creating a life history using the free template that can be downloaded from our website, can help improve care and memory retention, help build self-esteem, and promote social inclusion and interaction.

For carers faced with this bleak situation, things could drastically change if these carers — who do care — recognised the value of, and had access to, education to help them in their task.