Home Clinical Psychology & Psychotherapy What Happens When There Is a Diagnosis of Dementia in the Family?

What Happens When There Is a Diagnosis of Dementia in the Family?

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According to Alzheimer’s Research UK, there are over 835, 000 people affected by dementia in the UK today, and this statistic is expected to rise to over 850, 000 in the upcoming years. The people affected by dementia in the UK are not just the people who have the disease themselves, but it is also the family and friends of those people who take the time and effort to support a loved one going through the progression of the disease.

As a memory researcher myself, the psychological reasoning behind dementia has always been an interesting topic of research to me and this then developed even further when I wanted to know more about a loved one, my grandmother, who was diagnosed in early 2014. I read about research which had found the link between differing brain structures and dementia and other finding which suggested that age could be a large contributing factor. For my family, the main cause of the dementia was a stroke and this was clear during the numerous hospital visits and scans the family had to be supported with.

One of the most widely researched types of dementia is semantic dementia (the type of dementia my grandmother was diagnosed with) and this type of dementia can be categorised with the loss of semantic memory. People with semantic dementia will progressively begin to lose the ability to put words and pictures into semantic categories. So for example, they may not be able to say that a tiger and lion are both large cats.

A person with semantic dementia will also lose memories of who people are and this, for a family, can be one of the worst symptoms to cope with. The person with semantic dementia could remember a face one day, but not the next, and this was one thing that was experienced by my family on a daily basis. There were several occasions where I would visit my grandmother and she would not understand who I was or even where she was or why she was in the lovely care home she was in. One of the surprising things, however, was that my grandmother’s memory for events (such as when a family member moved to Scotland) were very much intact, and again, this was evidence for the doctor’s that they were dealing with a patient who had semantic dementia.

While my family was going through supporting a loved one with dementia, we often wondered who was there to support us. We often found that support pages and charities such as Dementia UK were there for the family to talk about what to expect after the diagnosis. Fundraising, such as completing a Memory Walk, was also another way in which the family helped to make everything. There were quite a few times where the family were unsure of how to deal with my grandmother’s progressive memory loss, in particular when a second stroke occurred, causing my grandmother’s memory to rapidly deteriorate. Even though the initial diagnosis was nearly four years ago, the impact that this has on the family can be still seen. We had four years of watching someone slowly lose themselves which was, personally, one of the worst things I have had to deal with. Now, my grandmother is at peace and no longer has to deal with such an awful, life changing disease.

When a family has a relation who has been diagnosed with dementia, they must remember that they are not alone. Supporting themselves as a family can be a real help, but there are always support services available for when people are really finding it difficult thing to cope with. My family have had amazing support over the years and the support still continues even when the person with dementia has gone.

Laura Jenkins, PhD is a teaching associate in the School of Sport, Exercise and Health Sciences at Loughborough University. 


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