June this year is an important month in the calendar. Why? Because it hosts both Dementia Awareness Week (30th May – 6th June) and National Carers Week (6th – 12th June). For us this is an opportunity to raise awareness not only of the importance of helping people in our community to live well with dementia but also of the need to be supportive to those who care for them.
So, what is dementia? Well, the term refers to a number of conditions which affect the brain and have a set of symptoms that may include memory loss and difficulties with thinking, problem-solving and language. This means that everyday tasks become more difficult and a person may take longer to process thoughts and react to situations. It is a progressive disease, and the symptoms may gradually get worse, but never the less, particularly in the early stages, people living with dementia can continue to lead full and active lives, participating in hobbies and activities with perhaps a little extra support and understanding from those around them.
Having dementia does not necessarily mean that you are old or infirm, stuck at home or unable to enjoy life; many people remain physically fit and active. However, as there are no outward signs that a person has dementia – no plaster cast or bandage– this can sometimes lead to misunderstandings when for example a person’s words or behaviours are misconstrued or cause offence. This is difficult not only for the person living with dementia but also for the person who cares for them.
One example is Tom. Tom is a physically fit and able gentleman in his sixties who is living with a diagnosis of dementia. Tom has a dog which he enjoys walking daily; sticking to a route which is familiar to him so that his wife, who is his main carer, knows he can manage unsupported. The walk gives Tom a sense of independence and self-worth and it makes him feel happy to be outside and contributing to the family tasks. Recently though, while out walking, the dog messed on the pavement in a way which was too messy to be dealt with by a poo bag alone. Realising he would require sand to cover it, Tom returned home but before he could deal with the situation he was confronted by a passer-by who remonstrated with him about his actions. Unsure how to respond, Tom was left badly shaken by this and now lacks the confidence to walk the dog on his own. Equally, Tom’s wife has been affected, not only because of the upset of seeing Tom distressed and his confidence dented, but also because the brief amount of respite she gained while Tom was walking the dog is no longer available to her. In effect, Tom’s world has become smaller since that fateful day.
On a positive note, we should feel honoured and privileged that each and every one of us can make a valuable difference. In offering positive encouragement and support to people living with dementia, they can continue to be the valued members of the community they have always been.
National Carers Week is an annual campaign to raise awareness of caring, highlight the challenges carers face and recognise the contribution they make to families and communities. This year the focus is on carer friendly communities which support carers to look after their family or friends well, while recognising that they are individuals with needs of their own. It is estimated that 3 in 5 of us will become carers at some point in our lives, perhaps to a spouse or elderly relative, or even a friend or neighbour. Many people would not identify themselves as being a carer, seeing the role as a natural extension of their relationship, and yet the tasks they perform and support they provide are essential in maintaining the health and well-being of the person they care for. Caring can be a rich source of satisfaction in people’s lives. It can be life-affirming. It can help deepen and strengthen relationships.
But without the right support caring can also have a devastating impact. Evidence shows that caring can cause ill health, and social isolation. When caring is intensive and unsupported you can struggle to hold down a job, get a night’s sleep, stay healthy and maintain your relationships with friends and family.
In supporting carers in the Perth area we often hear of the challenges they face.
Families and friends, neighbours and community members are an essential source of support for carers, providing emotional and practical help with their caring role. Not all carers find it easy to talk to relatives and friends about the care they are providing and the strain it places on them. The stresses and pressures of caring can make it difficult to maintain relationships with friends and to continue living a full and involved life within the community. Carers Week gives you a great opportunity to talk to them about their caring role, understand what they do and its impact on them, practically and emotionally. Sometimes just asking the simple question, ‘how is it going for you?’ or ‘can I do anything to help you,’ is enough. Supporting the carer enables them to better support the person they care for to continue to live a fulfilling life within our neighbourhood and communities.
You too can make a difference!
Heather Reid and Aileen Craigie (Lewis Place Day Centre/Day Opportunities)