A week in my . . . role as dementia adviser: ‘We want to enable people with dementia to be independent for as long as possible’

My job as a dementia adviser in the community is one of seven new posts across the country funded by the Alzheimer Society of Ireland. Prior to this work, I was a home care co-ordinator in Co Louth, so I had to deal with people in their own homes and organise HSE referrals for people with dementia. I was very aware of how important it was to find care workers who suited families in terms of their personalities as well as their suitability for the work they had to do. Before that I worked as part of the community parents scheme, visiting mothers with their new babies.

So, when it came to this job, I already had lots of experience of visiting people in their homes. The role of a dementia adviser is to offer information and support to anyone who is newly diagnosed with dementia, and to their families. There are currently about 48,000 people living with dementia in Ireland and about 63 per cent of those individuals live in their own homes. Perhaps it’s too early for them to access daycare, or home-care services, but they might have memory loss, confusion and difficulties with daily living. Many people with dementia struggle for years before accessing services but it’s important to offer them support as early as possible.

I work in Counties Cavan and Monaghan. People can refer themselves to me and ask me to visit them in their homes. Or, public health nurses or GPs might give them an information leaflet about my work and suggest they make contact. This is a free, confidential service, funded by the Alzheimer Society of Ireland.

Sometimes, an individual is so overwhelmed by the diagnosis of dementia that they just need someone to talk to. It can be difficult to know what services will be available to them; they may need help with financial or legal matters. So I make an appointment to come to see them and, essentially, I listen. I give answers when I can and pass on accurate information about dementia and Alzheimer’s disease, which is the most common form of dementia.

Myths and fears 

There are a lot of myths and fears about dementia. When people think of dementia, they often

think of only the end-stage disease. They don’t realise that it is a long journey and that, with the right supports, people can live well for many years.

Many people diagnosed with early-stage dementia start to cut themselves off from their communities because they are embarrassed about forgetting people’s names. We 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 sometimes there is a reason for grumpiness. The person with dementia might have a pain or feel generally unwell and not be able to communicate this. There might be loud music somewhere, or a particularly busy environment that agitates them, although they can’t always process what is making them agitated. 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 and patience 

Listening carefully and being patient are the most important things to remember when spending time with someone with dementia. Caring for

sufferers 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.

I find 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. It is also very difficult to access services for this group. There are about 4,000 people with early-onset dementia in Ireland. The development of Alzheimer cafes gives people the opportunity to socialise with their loved ones in an environment where people understand their needs.

Although I have been in the job since September 2014, I know that I haven’t reached all those with dementia in the towns and rural parts of Cavan and Monaghan. There are active branches of the Alzheimer Society of Ireland in both counties who pass on my contact details to anyone who wants them. I also give talks to local groups and run family training courses about dementia. I plan my working days around the home visits I make. To unwind after my work, I enjoy acting in amateur dramatic groups in Dundalk, where I live.

Future care

Sometimes I think there will be a greater need for home visitors when people of my generation are older because so many adult children have emigrated in the past few years. Coupled with the fact that people have fewer children now, there won’t be as many family members to care for older people in the future. We may all be dependent on the kindness of strangers in our lifetime. So it’s important to plan for and put in those services now.

To contact the Alzheimer Society of Ireland, see alzheimer.ie or tel. 1800-341341. If you are in the Cavan/Monaghan area, you can contact Maeve Mongomery on 087-7489258.

To learn more about denentia visit The Irish Times Health Centre at www.irishtimes.com/thehealthcentre