COPING WITH DEMENTIA: HOW THE MONAGHAN ADVISER CAN HELP Michael Fisher: Carrickmacross News Thursday 12th March 2015 The Northern Standard p.43

It can be very difficult to cope when a parent, brother, sister or other relative or maybe a friend develops dementia. Maeve Montgomery is there to help. There are 700 people with some form of memory loss in County Monaghan and 850 in neighbouring Cavan (2011 census figures). Maeve was appointed by the Alzheimer Society of Ireland last September to the post of dementia adviser, one of seven around the country. She will visit people in their homes to offer information and support when someone has been diagnosed with dementia. She can also give advice to anyone who calls to her office at the renovated Workhouse building in Carrickmacross.

The service, which is free and confidential, provides information tailored to individual needs, as well as emotional support. Maeve works with people of any age who have been diagnosed, or who are awaiting a diagnosis of dementia, as well as family members. As well as contacting her directly, people are sometimes referred to her by a health care professional such as a GP or public health nurse.

Speaking to the Northern Standard about her role, Maeve said it was important to reach people with dementia as early as possible. She feels there is a need for more back-up services, especially in rural areas like Monaghan. This will require more funding, which comes mainly from voluntary sources, as well as the HSE. She has high praise for the team of volunteers that raise funds locally, including an Alzheimer’s group in Carrickmacross chaired by Mae Murphy. They run a day care centre at Cloughvalley every Thursday.

Dementia and Alzheimer’s are used almost interchangeably by the lay person, possibly because Alzheimer’s is the most common form of dementia. There is also vascular dementia, arising from a stroke; Lewybody dementia (degeneration of brain tissue) and fronto-temporal dementia, affecting personality and behaviour.

Whilst they share similarities such as short-term memory loss, inability to carry out routine tasks, occasionally wandering, or repetition of questions, Maeve attempts to take every case on its own merits, as everyone is an individual. She hopes her service can help to give someone the best possible quality of life in the early stages of dementia. Her approach is to look at what people can do, rather than what they cannot do.

She can provide information about the condition and how to cope with the changes; how to live well on a day-to-day basis; how to plan for the future, including legal and financial matters; driving; services and supports available locally such as the Drumkill day centre at Threemilehouse; and how to get in touch with other people with dementia and their families.

Maeve said that where it is safe to do so, the emphasis should be on the affected person staying at home, if that is their choice, and enabling them to live independently and to live well, if the dementia is at an early stage. Smart technology can be used for devices that might help in a home, such as mats that detect movement or beams that set off alarms.

She says that grandchildren can play a useful role in helping a family member with dementia by asking them to reminisce about the way things were twenty or thirty years ago. Those long-term memories are often sharper whereas what happened yesterday can be a blur for someone with the condition. It can be a good idea to develop a life story, in which grandparents can get great joy from looking back at traditions associated with events such as Easter, Christmas or Halloween.

The Alzheimer Society estimate that 48,000 individuals in Ireland are living with dementia. For every person diagnosed they believe that, on average, three family members are directly affected. With an ageing population and no cure on the horizon, it’s only going to get worse. We are just not getting to them early enough,” Maeve says. “The hope is that we will get to people earlier. The sooner I can get to them the better for them, because there are very good services, but by the time they get into the services they’ve struggled maybe for years, with nobody. Maybe a person who has battled on with the knowledge that their memory is slipping, or that they are not able to carry out the same daily activities as effectively as they were; maybe their family have noticed it, which is quite common”.

Anyone concerned about their own memory loss, or that of a family member can contact Maeve, even before a diagnosis of dementia has been made. In practice however, most contact with Maeve is made post-diagnosis, often when the disease is at quite an advanced stage. This has been her experience in her previous role as ASI home care coordinator for County Louth, based in Dundalk.

“Quite often by the time someone was referred to me, they were on their knees. They had gone through quite a journey before they had got to us. If we’d only got to them a bit earlier maybe we could have made that journey a little bit easier”.

Of course a dreadful milestone in that journey is the diagnosis. “You walk out, and you are sitting in the car park, you’re reeling. It’s like getting the diagnosis of any serious condition, you are reeling. So anything that the specialist may have said to you might have come in one ear and out the other, because once you hear the word – do you go into a fog? Not everybody, but some people come out and they are so shocked that their worst fears have been realised. They maybe feeling quite bleak. They might be in a very deep dark hole as they sit there. They need someone to talk to at that point. So the idea of the adviser role is that we get in more quickly and we give them someone to support and talk to”.

Maeve says the Association’s aim is to help people live well with dementia. In helping a loved one maximise their quality of life, communication is key. “Always, tell them what you are doing. It doesn’t matter what stage they are at, always explain what you are doing and then it might be easier, because you don’t know what someone can understand if they can’t express themselves, so always assume they can understand what you are saying.” She also encourages families to include the dementia sufferer in the lifeblood of the home, conversation.

“It would be very easy not to do that, because they are not actively contributing to the conversation. But if you turn to someone with dementia and include them, even by looking at them, your body language, all of that – they feel included and it makes them feel better.”

Regardless of their ability to speak, communication in at least some form is usually possible, as Maeve notes that merely 30% of communication is verbal. “The rest is gestures, eye contact, body language – all of that. People with dementia can lose words, they can lose speech, their ability to string sentences together, but they can still communicate and we have to adapt to learning how to read what they are saying,” she explains. Even if a person uses the wrong word for an item, as far as Maeve is concerned that should now be the new, accepted word for the item. However families can struggle with this notion. “You can understand that, there is an awful lot of emotion involved in the caring for someone. We are trying to say: ‘We’ll go with that’.” Going with that includes encouraging the person with dementia to continue to be active. As they lose the ability to carry out simple tasks, Maeve suggests that the carers focus on the tasks the person can still do, or attempt to do, rather than zero in on what they can’t.

People with dementia can be prone to depression as they watch their abilities diminish over time. Thus it is all the more important to be supportive and accentuate the positive – even if they can no longer complete simple household tasks perfectly. “They might be able to complete it imperfectly, and that’s okay. And it’s okay if they lose interest because their attention span isn’t as good. So even if they can do it for a little while and then leave it, that’s okay too.” In other words: go with it.

Many people diagnosed with early-stage dementia start to cut themselves off from their communities because they are embarrassed about forgetting people’s names. Maeve says they advise people to maintain their social life and suggest ways around situations, such as by saying something like “my memory isn’t what it used to be. Please tell me your name.” It’s not such a big mistake to forget someone’s name.

Similarly, friends can stop calling to see someone who has been diagnosed with dementia. This can be very isolating for the person and their carer. It’s very important for friends and family members to continue to call to see someone with dementia, as it gives both the carer and the person a break in the day.

Sometimes, people perk up when someone calls to see them even if they don’t seem to recognise the visitor. People with dementia can have an emotional memory of someone and not be able to articulate this.

Sometimes, familiar people are mixed up so a daughter can be confused with a sister, or a son with a brother. This can seem very strange to the person visiting, but often the associations are pleasant, so their spirits are lifted by seeing the person.

People also sometimes think that people with dementia are automatically aggressive. This isn’t the case, but there is often a reason for the grumpiness. Sometimes, giving the person clues about why they aren’t comfortable can help. For example, ask if they would like to go somewhere quieter, or whether they have a pain or feel uncomfortable in the seat.

Listening carefully and being patient are the most important things to remember when spending time with someone with dementia. Caring for those with dementia can be very stressful, so having someone new come into the house can be a relief. However, it can also be annoying if someone says how well the person is, if the carer has been dealing with lots of difficult situations in the past few days. It’s very important to look after the carers of people with dementia.

Maeve says she finds it very rewarding to visit people in their homes. Our mission in the Alzheimer Society of Ireland is to enable people with dementia to be as independent as possible for as long as they can. It’s impossible to put a timeframe on how long someone will remain well with dementia. There is a lot of love and kindness and gentleness involved in talking to people with dementia. When you reminisce with them, you are learning about social history and giving them so much pleasure at the same time. We also visit people with early-onset dementia. It can be difficult for families to accept a diagnosis of dementia for someone under 65.

The development of Alzheimer cafes gives people the opportunity to socialise with their loved ones in an environment where people understand their needs. More information about support services can be found at: www.alzheimer.ie and Maeve Montgomery can be contacted on (087) 7489258.

THE PHOTOGRAPHS

The three pictures that were used to illustrate this article (in the paper) were taken by Ardee-based photographer Ken Finegan, from a series entitled ‘Club Life’ . Taken in 2012, they depict club members of the Birches Alzheimers Day Care Centre in Dundalk. Some of the pictures have been presented to Dundalk Institute of Technology.

“Club Life” is a highly personal yet objective photographic study of Alzheimer’s disease and dementia. It questions, searches for knowledge, informs, is a possible insight not only of the person affected and the disease but an insight or understanding of oneself, one’s essence.

Ken explained, “The images reflect the difficulties individuals and others face during their day to day lives, like short term memory loss, confusion and frustration. But they also reflect the care and consideration of the person.”

‘Club Life’ refers to the people at The Birches and the life they lead, but also to our own lives. Ken says that in creating the images he sought to portray the sense of ‘personhood’ of those who attend the centre.

Ken is a professional photographer working in the North East of Ireland for over 28 years. He covers all areas of photography and has a Masters Degree in Fine Art (MFA) from the University of Ulster.