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New support group offers lifeline to carers and families of dementia patients

Carers listen to advice given by nurse Fay Newman during the Lions support group meeting in Mijas.
Carers listen to advice given by nurse Fay Newman during the Lions support group meeting in Mijas. / T. BRYANT
  • The group was formed by the Mijas Lions, who realised the demand for a service to help expats who care for loved ones with dementia

La Cala de Mijas Lions Club has launched the association's first Alzheimer's and Dementia Support Group. The support group was formed because the Lions realised there was a great demand for a service to help English-speaking expats living in the Malaga province who care for people with dementia.

The first meeting was attended by trained staff and a qualified nurse, who offered free assistance with medical queries and respite care. The purpose of the group is to provide support, information and friendship to the carers in order to allow them to cope better by sharing their feelings and experiences. The sessions also offer carers the chance to meet other people in similar situations, while their loved ones are kept stimulated with special activities in a separate area.

Caring for someone with any type of dementia is stressful and intensely emotional, especially when their memories and skills begin to diminish. These changes can produce emotional confusion for both carer and patient and, as the patient's needs increase, the carers' responsibilities will become more challenging. Seeing as there is currently no cure, it is the carer who usually makes the biggest difference to the quality of life of a sufferer.

Physical and mental burden

However, the care often becomes all-consuming and as a patient's functional and physical abilities continue to diminish, the burden often puts the carer at great risk of significant health problems like depression, exhaustion and high levels of stress.

The group is run by Sandie Tavendale, who became a Lion in 2016. Although not a qualified specialist, Sandie acquired experience as a carer while looking after her own mother, who suffered with Alzheimer's for 20 years. Sandie believes the support group is necessary here on the coast because carers are the ones who often feel isolated.

"I have experienced this disease first hand, so I know what it is like to be isolated. You stop getting invites from people because they are embarrassed and do not know how to handle the situation. You are also embarrassed about what your loved one might do.

"Many carers feel they are isolated, and they need to talk to others who are caring for loved ones, so this is why the group was founded," Sandie explained to SUR in English.

Other advice offered by the specialists during the meeting was to "keep things simple". Sandie told the group that it is "important to focus on feelings rather than words", and "not to argue or try to reason with the person".

"One of the problems when looking after someone with dementia is frustration. I used to sometimes shout at my mother even though I knew about the illness: occasionally it just wears you down and can make you very frustrated," she declared.

Early detection

Understanding the difference between the two terms is important for the families and carers of those suffering with Alzheimer's or dementia and, as nurse Fay Newman points out, early detection of the disease is imperative.

"There are many types of dementia and this makes it a very complex subject. One of the problems is patients not being diagnosed because family members sometimes fail to notice the changes straight away. Many put it down to getting forgetful because of their age, but loved ones should try to detect the early symptoms by making note of unusual behaviour to see if it is reoccurring."

British expat Pauline Hulme is caring for her husband David, who was diagnosed with Alzheimer's three years ago, although she feels that the disease may have struck much earlier than this.

"When I look back in hindsight, I think it may have begun about five years ago, but we didn't realise at the time. As the disease progresses, so we lose more and more of the person who had once been a best friend, a main support and the person who shared my life and home," Pauline said.

Alzheimer's is the most common cause of dementia - a general term for a decline in mental ability severe enough to interfere with daily life. There are many different types of dementia and the disease can be triggered by numerous conditions. Alzheimer's accounts for between 60 and 80 per cent of dementia cases, although dementia is not a normal part of the aging process. The disease is caused by damage to the brain cells and this will affect a person's ability to communicate, their thinking and their behaviour.

Symptoms

Alzheimer's is a degenerative brain disease caused by cell damage and the symptoms gradually worsen over time. One of the first symptoms of Alzheimer's is memory loss, especially remembering new information: the disease attacks the part of the brain associated with learning. As the disease advances, symptoms become more severe and the patient will experience confusion, disorientation and behavioural changes.

Although the biggest risk factor for Alzheimer's is old age, like dementia, it is not a normal part of ageing. Sadly, there is no cure and no way to prevent the disease or slow its progression: there are only limited medical treatments available for the symptoms.

"We have medication to help ease agitation, paranoia and confusion, but it is important to try to be compassionate and understanding, as it is a very stressful experience for both patient and carer," Fay said.

Age Concern President David Long attended the meeting, as his association intends to work closely with the support group.

"We offered our help because we feel it is a much-needed service. It is very difficult for those who have to look after a loved one with this condition: it is extremely upsetting to watch them deteriorate and know there is nothing you can do because you know they will not get better," the president explained.

The Lions Alzheimer and Dementia Support Group meets at Bar Tuta in La Cala de Mijas on the second and fourth Monday of each month between 11.30am and 1.30pm.

For more information contact annediabetics@gmail.com