Caring for a loved one with dementia takes time, energy and, above all, love. It can be a long and emotional journey but with the proper support, it can be a rewarding one too.

Through this campaign members of the Dementia Carers Campaign Network highlight the different stages of a dementia carer’s journey, sharing their personal experiences of the issues and needs that arise at each stage. You can download a copy of the campaign document here.

Part 1: Concern About a Loved One

Richard with his wife Helen, during the early stages of dementia

“My wife Helen had an energetic, lively personality, with a great smile and a ready laugh. She was in her mid-fifties when we began to notice a gradual change in her. She lost weight, even though she seemed to be eating normally, she also became noticeably quieter. Sometimes, I found it difficult to locate ordinary household items like coffee, tea, sugar, and when I did discover them, they were not in their usual places. While exasperating at times, during those early days I learned to develop more patience and to accept that Helen’s actions were not intentional.” Richard Dolan

Listen to Richard’s full story here or read more of his story here

These Alzheimer Society of Ireland factsheets and booklets may be relevant to you. We post copies of these information resources free of charge to family carers, just call 1800 341 341.

If you would like to speak to someone, our free and confidential Helpline is available 6 days a week, please call 1800 341 341

Part 2: Visit to the Doctor and Diagnosis

Annie with her husband Philip

“I got a call from the doctor. I pulled over and asked him about the results of the test. He said, and I will never forget it, “Philip’s brain is considerably atrophied”. I don't remember much about the rest of the conversation as I was shaking and weeping at the same time. When the conversation finished I sat in the car dazed. I really knew nothing about dementia except the negative stereotypes and instinctively I knew the key to helping me come to terms with this diagnosis was knowledge.” Annie McGuinness

Listen to Annie’s full story here or read more of her story here

These Alzheimer Society of Ireland factsheets and booklets may be relevant to you. We post copies of these information resources free of charge to family carers, just call 1800 341 341.

If you would like to speak to someone, our free and confidential Helpline is available 6 days a week, please call 1800 341 341.

Part 3: Early Stages of Dementia- Post-Diagnostic Supports

Paddy with his husband Derek

“From day one I encouraged Derek to maintain his independence as much as possible; he made a will, decided on Power of Attorney and got his affairs in order. I believe what would be ideal for a person with early onset Alzheimer’s is to have a ‘buddy system’. I know Derek has faded over the last four years, but it is a slow, gradual change. He is a fantastic partner, so I’m not prepared to have his life taken over and all his independence taken away.” Paddy Crosbie

Listen to Paddy’s full story here or read more of his story here

These Alzheimer Society of Ireland factsheets and booklets may be relevant to you. We post copies of these information resource free of charge to family carers, just call 1800 341 341.

If you would like to speak to someone, our free and confidential Helpline is available 6 days a week, call 1800 341 341.

Part 4: Middle Stages of Dementia- Condition Management

Micheál with his mother Kate 

“My father and I work together to care for my mum. He is 81, she is 68 and I am 33. At the moment she is losing her ability to communicate clearly. Her words are completely jumbled most of the time. Due to stress and fear she needs someone to be with her all of the time. Breaks are so vital for releasing the tension. I try to go to the gym several times during the week. I also try to visit my friends. Our daily routine of getting out walking and meeting people is beneficial for her and me.” Micheál Rowsome                          

Listen to Micheál’s full story here or read more of his story here

These Alzheimer Society of Ireland factsheets and booklets may be relevant to you. We post copies of these information resource free of charge to family carers, just call 1800 341 341.

If you would like to speak to someone, our free and confidential Helpline is available 6 days a week, please call 1800 341 341.

Part 5: Later Stages of Dementia- Care in the Community and in Long-Term Residential Care

“With Mum’s dementia, because of the form it took, there came a time when home was no longer a suitable environment for her; her needs could no longer be met there. She was unhappy, uncomfortable and unsafe. This was a huge decision to make. I will always feel sad that Mum is not in her own home, but I know that we are doing our outmost to make sure that she is well cared for, comfortable and that she feels our love for her every day.” Nuala Ryan

Listen to Nuala's full story here or read more of her story here

These Alzheimer Society of Ireland factsheets and booklets may be relevant to you. We post copies of these information resource free of charge to family carers, just call 1800 341 341.

If you would like to speak to someone, our free and confidential Helpline is available 6 days a week, please call 1800 341 341.

Part 6: Following the Loss of a Loved One with Dementia

Ray with his father Paddy

“I spent eight years caring for my father until he passed away from vascular dementia. It is a massive void when the person you spent so long caring for is suddenly gone. You miss the camaraderie of the other carers and people you get to know so well when you regularly visit day centres and social clubs; suddenly this support network is gone, as is the person who relied on you so much. My advice to anyone taking on a full-time caring role is to find out what your rights are, claim everything you are entitled to.” Ray Cregan

Listen to Ray’s full story here or read more of his story here

This Alzheimer Society of Ireland factsheet may be relevant to you. We post copies of information resource free of charge to family carers, just call 1800 341 341.

If you would like to speak to someone, our free and confidential Helpline is available 6 days a week, please call 1800 341 341.

The Dementia Carers Campaign Network is open to anyone in the Republic of Ireland who has experience caring for someone with dementia. It is a national campaigning group, raising awareness of issues facing families affected by dementia and lobbying for policy change. If you would like more information about the Dementia Carers Campaign Network please contact us at advocacy@alzheimer.ie

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