Last Word: Maximising life between the ever decreasing circles of dementia

Last month MAEVE MONTGOMERY took up the new role of dementia adviser for counties Cavan and Monaghan, working for the Alzheimer Society of Ireland (ASI). Maeve spoke to Damian McCarney last week about the growing problem of dementia, the trauma of diagnosis, grieving for someone who's still alive, and relieving the guilt of loved ones.

"Has everyone got one of these?" Maeve Montgomery commands the centre of the community centre's wooden floor, waving aloft a clutch of information pamphlets. Not a soul pays the slightest heed. Some shuffle off in pairs towards the exit, a small group are too absorbed in a neighbourly chat to notice. Unfazed, Maeve cheerfully helps volunteers stack chairs and tidy up after Wednesday's meeting of the Forget Me Not Cafe in Castlemanor Community Centre.

Maeve doesn't always take being roundly ignored so well. Her pet hate is retail assistants at check-outs who natter to a colleague about their escapades from the night before, oblivious to the seemingly invisible shopper before them.

"They just talk as if you were nothing," says Maeve, "as if you were a blank wall."

Naturally good humoured, it's hard to imagine Maeve ever getting too vexed. She's trying to get across the daily frustration that someone living with advanced dementia may well feel if their loved ones, albeit understandably, interpret their lack of responsiveness as a reason not to engage with them.

"That's a horrible feeling, so don't do that to someone with dementia. We don't know what they can understand. Even if it is only a feeling of being included, it is a lovely feeling. Caring for someone with dementia can be very challenging, and with the condition's cruel advance, these challenges can overpower. As the new Alzheimer Society of Ireland's (ASI) appointed dementia adviser for Cavan and Monaghan, Maeve is here to help chart the path of least resistance through these challenges.

Dementia and Alzheimers are used almost interchangeably by the lay person, possibly because Alzheimers is the most common form of dementia, accounting for over half of all cases. Another reason why Alzheimers pokes its grim head from beneath the umbrella term of dementia could be the impenetrability of the other degenerative brain diseases: vascular dementia, dementia with Lewy bodies, frontotemporal dementia, progressive supranuclear palsy, corticobasal degeneration... Whilst they share similarities - frequently short term memory loss, inability to carry out routine tasks, occasionally wandering, repetition of questions - Maeve tries to "take every case on its merits; everyone is an individual".

Sadly ASI estimate that 48,000 individuals nationally are living with dementia. For every person diagnosed they believe that, on average, three family members are directly affected.

Struggled

"If you multiply that up," Maeve notes, "that's a very very high percentage of people in a small country."

With an ageing population and no cure on the horizon, it's only going to get worse. That's especially bad news since ASI is already playing catch-up.

"We are just not getting to them early enough," she repeatedly accepts.

"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 in Louth.

"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 this [adviser role] is we get in more quickly and we give them someone to support and talk to."

Age is a significant factor in susceptibility to dementia; typically it first announces its arrival in those in their late 70s. When it affects those under 65, it is termed early onset dementia. ASI estimate that 4,000 people in the Republic have early on-set dementia; the vast majority of sufferers are older than 65.

"The youngest person that I ever came across was in their 40s," recalls Maeve. "I've been at this since 2002, and the woman was actually a year younger than myself at the time. When I saw her date of birth I said, 'how can this be?' She had a young family and that was very hard. It's never easy, but somehow a young person getting it, when they still have a young family, is very poignant.

"As you get older the chances of you getting this increase, but not everybody gets it, it's not inevitable you will get dementia."

Forgetfulness

Can forgetfulness ever be a benign, consequence of old age - just doting?

"Short term memory loss is not to be taken as normal," Maeve cautions. "But it might not necessarily be dementia. The important thing is to have yourself checked out, because it could be something else. It could be as a result of depression, it could be the result of an infection or another underlying illness."

She accepts that fear can deter many from presenting to their GP with forgetfulness, or confusion.

"That's understandable, if I've got something I don't want to know, but if you do know there may be some treatment which might help you. Now there is no cure, we’re not going to pretend there is a cure, but there may be some treatment or there may be something you can do that can help you cope better with living with dementia. Our 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. Always. 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 the carers to focus on the tasks the person can still do, or attempt to do, rather than zero in on what they can't.

"We know it's ever decreasing circles; we know that people are losing skills. It is a degenerative disease, we understand that, but what we are trying to encourage is that people work with the skills that people still have, so that we keep those going for as long as we can. Sufferers 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.

Hurt

Whilst Maeve can offer a caring ear to a stricken family, empower them by giving advice on benefits, entitlements, services, give support, there is a limit to what can be done. There is never a happy ending to the dementia story. Whether it is a terminal illness or not is a moot point - it remains until death, and often hastens death.

In the interval the nature of relationships change. "That's what I keep hearing: I'm not living with the person I married. Because the personality changes."

Also, it can cause a very deep sense of hurt to close relatives if the person can no longer recognise them. In instances where they confuse their children with their siblings, Maeve puts this down a reliance on their long term memory as their short term memory recedes.

"It's not personal," Maeve assures. "The brain cells are damaged and this is just the way the messages are coming through... the messages are garbled. They do know you, it's just the thoughts aren't coming through the brain cells the way they should."

Guilt is a common emotion felt by relatives.

"One of the big things people deal with is grief - we call it ambiguous grief because the person is still alive, but they are actually grieving, and one of the characteristics of grief is guilt. Anger, denial, acceptance - all of these things can come."

Maeve has witnessed relatives who "have done their absolute best, and couldn't possibly do any more say, 'I feel guilty', simply because they sought help.

"We try to ease that guilt. Guilt isn't the right thing for you to feel because you are doing everything you can. The right thing to do here is to get help, because if you don't get help, you won't be able to cope, and then you'll suffer. So it's to try to make sense of that so then the guilt is eased."

Maeve is eager for anyone/families affected by dementia to make contact.

"I want to encourage people to ring me. This is a free service. If they talk to me and they feel it's not for them, that's alright. Don't be afraid to ring me; you won't be wasting my time or bothering me - get in touch."

Maeve Montgomery: 087 7489 258