Becoming a carer isn’t a role anyone plans in their life and many people who are caring for a relative or friend do not identify as being a ‘carer’. But when a person is diagnosed with a life-limiting illness, usually someone in the family steps up and takes responsibility. In small ways at the start, maybe, but gradually the demands increase, until caring becomes an all-consuming occupation.

We talk a lot about caring for a ‘loved one’ with dementia and it may, indeed, be the case that the person with dementia is loved, but this is not always so. The prospect of caring for a relative who you do not love, or perhaps, you love, but do not like, is difficult to face and almost impossible to sustain.

Dementia does bring about personality changes and the advice is to understand that the difficulties with a person’s behaviour are caused by their illness, that they wouldn’t behave in this way were it not for their progressing dementia. Brain changes, especially in the frontal lobes, cause disinhibition: the moderator in our brains that tell us where to draw the line is faulty. People with this kind of impairment might say or do things that are socially unacceptable, upsetting, embarrassing or appear rude.

But it isn’t always about the person’s dementia, at least, not wholly: age and illness can intensify longstanding personality traits in some unpalatable ways. For example, an irritable person may frequently become enraged, or an impatient person may become demanding and impossible to please. Unfortunately, the primary carer often becomes the foil for a person’s anger.

People with dementia do have good reason to be angry. This is an unwelcome diagnosis, and the greater awareness of dementia in the public domain nowadays means that there is more exposure to the realities of its impact in the later stages. Distress, rage, sadness and depression are reasonable responses to an unreasonable situation.

One issue to consider is whether the person you are caring for is depressed. Depression can be treated. Very often, once someone has a diagnosis of dementia, all their symptoms are attributed to their dementia and other conditions can be overlooked.

Depression can manifest itself in varying ways and can easily be missed, overshadowed by a dementia diagnosis, and yet it is common for people with dementia to be depressed. Between 20% and 40% of people with dementia also have depression and it is particularly prevalent for those who have vascular dementia or Parkinson’s disease dementia. A specialist assessment by an older person’s mental health clinician should be undertaken and if medication is prescribed, this should be regularly reviewed.

Notwithstanding what might be causing a person’s ‘unreasonable’ behaviour’ what do you do if you do not feel a sense of empathy, compassion and love for the person you’re caring for?

Here are some points to consider:
• Talking to others in a similar situation may help, seek out a confidant with whom you can be honest and talk openly about how you feel and the issues that are really distressing you.
• Troubled family relationships will have an impact on the caring situation you are dealing with and these can play out in unexpected and complex ways. Take time to talk to other family members to clarify respective roles and responsibilities. Make your feelings known and endeavour to reach solutions based on compromise and negotiated agreements.
• Taking regular breaks will help you to stand back from the everyday fray and develop fresh perspectives. Rest and sleep heal the brain and body, allow yourself time to recuperate and regain your strength and energy.
• Caring is a choice, there are always alternative options, different ways for the needs of person you are caring for to be met. It might feel like you are trapped and hat you don’t have a choice. Whatever situation you are in, there are people who can help and services that can support you.
• Professional counselling will help you to clarify your thoughts and feelings about your situation, separating out the issues that are dementia related and those that were there all along and are connected to your pre-dementia relationship with the person you are caring for and the wider family.

A recent post on our facebook page read:
It would be nice to find an alternative phrase to “your loved one”. It is making quite an assumption frankly…given the reality of many family relationships. Often it is the case that the person being cared for is far from that, and the emotional terminology is unhelpful. Why not find a more neutral alternative?

Please email your thoughts on this post to askbarbara@livebetterwith.com

How do you cope with a partner or parent who tests your patience to its limits? Is this a situation that you have faced? How did you manage, do you have some tips for others experiencing similar difficulties? If you are struggling, do email askbarbara@livebetterwith.com or contact the Admiral Nurses Dementia Helpline on 0800 888 6678.