“No one really prepares you for the bombshell and the changes you know you are going to have to make in your life. I work full time (because I need to) and struggle with all of these things and the extra bits that my husband used to do but can’t any more. All my spare time is taken up helping him do the things he wants to do.” Family Carer.
Most of us get through life with the help of other people. Life with dementia doesn’t change that, but often we lose sight that we’re still families, friends and neighbours when we have dementia or someone we care about does. Too often services and support for carers and people with dementia and carers family to recognise and support our most important relationships and in some cases can undermine them.
People with dementia and their families and friends want what everyone else does – to have a quality of life, with people they care about, doing things that matter to them, at home and the wider world. People with dementia value greatly the support from family, friends and paid carers and want their contribution to be valued and supported. People with dementia can feel they are a burden on the people they care about and carer-strain is a major problem that often results in people going into a care home.
Not everyone wants to call themselves a carer, we want to stay as partners, sons and daughters, sisters and friends those are the relationships that matter to us and which sustain most of us through life. People will often avoid being turned into a carer for as long as the can, and often it’s when people seek outside help, for example from a GP, that they start to see themselves as a carer. Many of us provide care and support for many years before we accept the label of carer and juggle it along with all the other hats we wear.
What really helps family and friends who support people with dementia and how can paid services make a difference? Working with Carers of East Lothian and the Association of East Lothian Day Centres, we contacted people across East Lothian and asked them to tell us about what caring is like from the inside and what needs to change.
We would like to give a massive ‘Thank you” to the carers that told us their stories. We know for many of you it was hard and emotional.
The points below are accompanied by what carers told us.
Agnes Houston, a dementia activist from Coatbridge with Donna her carer and daughter.
” Donna is now our full time carer we grieve for our Mum and daughter time together and the fun things “
Carers support every aspect of life
“Although my visits were weekly, I phoned her 2 -3 times a day to check on her. I lived in X and she was in Y so it was a good way to stay in touch as her dementia worsened I needed to check on her more and sometimes do more visits during the week when needed.
“I do all Mum’s meals in advance and put them in her freezer, I do all her cleaning, washing and ironing, Pay all her bills and do all her shopping. I also provide a lot of support for her in other ways, like keeping her compliant and taking her out.”
It’s essential and it’s hard work
Caring for someone you live with dementia is tough, but it’s all about love, family and friendship. Carers know they make the difference whether someone is living at home or in a hospital.
“Although it was one of the biggest challenges I have ever faced, I would do it all over again because I loved my Nana dearly and she would have done the same for me. The emotional pain of dementia was the biggest challenge. We didn’t receive much support with this and I didn’t feel prepared for the deterioration of the illness.”
“Every hour outwith my work is spent caring, my weekends, my nights and any holidays are taken around my caring role to ensure that everything is up to date, shopping done and all correspondence and banking, forms and appointments are organised and taken to appointments if transport not organised.”
Caring is very emotional, carers live daily with grief and loss.
“It’s damn hard to keep a cheerful face and not let him see the stress, I can’t bear to see him crying.”
“It hurts to watch all your plans for retirement disappear one after the other and to know the person you were going to share them with is unlikely to be able to. I’m frightened about my own future and feel selfish even thinking about it.”
It’s often done with minimal outside support
“I feel I could do with more support but my husband would struggle to accept this.”
“All support currently given us for my husband and provided by the NHS. I feel as if no one is even vaguely interested in how I feel or how I manage.”
But outside support can make a big difference
“We got a lot of support when Mum came home from council services, OT and social worker. We got direct payments and were able to afford a live in carer, It worked well. Friends popped in and made Mum’s day more pleasurable. ……The Church Fellowship was helpful.”
A major source of stress was the quality of formal care services for various reasons.
Lack of time and a focus on tasks
“The East Lothian home carers were there 3 times a day to help my Nana with personal care, medication and meals. Although the carers did not have long time to spend with my Nana. I felt she needed them to stay with her a little longer, to have a cup of tea and chat with her for a while. My Nana was very isolated and had little contact with friends and family. I would try and encourage her to socialise in sheltered housing but she has little confidence to do this, this is where it would have been good if carers had supported her with this.”
Inconsistent quality of care
“Some of the carers are better than others as some of them go the extra mile and I feel confident that Mum gets good care from them. However there are other ones who don’t really bother too much and don’t have much conversation with Mum at all.”
Carers didn’t understand dementia or know the person
“Not convinced that the council carers know how to deal with dementia. They need to have more time allocated for feeding and just generally spending time chatting.”
Carers didn’t involve, respect or understand the role of the family carer
“More understanding about the impact on “the family” and different family values, by hospital and Nursing Home. We were just seen as a difficult family.”
“Hospital support would be helpful, staff having a better understanding of the carers role in being the best person that has the knowledge and experience in supporting the person being cared for, as everyone with dementia is very individual with individual needs that are not always recognized.”
Understanding dementia and challenging stigma were key issues
“Understanding the nature of dementia focusing on the positives and really appreciating the things I can still share with Mum. Feeling the stigma of dementia is being replaced by much more positive attitudes – thank you dementia friendly initiatives.”
CARERS WANT THINGS TO CHANGE. THEY WANT:
Better quality care services that do the things that need done
“Give Mum a shower twice a week!”
“Better regular carers who attend at the same times each day and who are able to follow a care plan.”
To work with paid carers as respected partners
‘Carers need to be part of the whole journey and process for the person with dementia, not an afterthought, as the professionals think they know best.”
They want better information over time
“Knowing what help us out there, maybe GPs giving families information of support groups when diagnosis is made.”
“Benefits should be explained at the start. Financial planning for the future.”
“A simple list of all the ‘activities’ that are available around the county and personal notification of any consultation or learning events planned.”
“Where to turn to in future.”
“Knowledge of dementia, what to expect, where to get help.”
And more emotional help and support
“Someone to guide me in the right direction for help. Someone to be my friend and the person I care for.”
“Just to have someone sit down and tell you you’re doing ok would be so good.”
“Being with other people in a similar situation.”
Carers want things to change
“I wish all the agencies, day centres, resources would come into this century. The people with dementia now in East Lothian have higher expectations, as do the carers, of what they need and what they expect from their communities and society as a whole. ….for the persons I care for the thought being transported round in a large minibus with day centre on the side or to a café specifically for dementia is marginalising the condition as was done to people with learning disabilities….”
And they want to be part of that change
“I would like to as other carers would, to be involved in consultation on new hospital and designs need to not only be disability friendly…. But dementia friendly…..As again dementia is marginalised and forgotten about.”
“Would like to see consultation at grass roots level with the Carers dealing with supporting people with dementia on a 24 hour basis. Their voice is so important as is the voice of people with the illness. They must be part of the process with trained advocates if required to support their voice in the process.”
We think the messages from people who care for and support people with dementia are clear and these should be taken up by East Lothian Council and the East Lothian Health and Social Care Partnership.
This year the Partnership will develop East Lothian’s first Dementia Strategy. People with dementia and their family and friends must be involved and our voices must be heard. Caring for someone with dementia brings unique challenges and these differences must be recognised.
Carers of East Lothian, the Association of East Lothian Day Centres and Dementia Friendly East Lothian will be working to ensure that the family, friends and communities that support people with dementia to have a quality of life are properly respected, involved and supported.
- Better quality of support – carers who understand dementia, have time to build relationships and so more than physical tasks.
- Recognition that people with younger onset dementia and their carers have different lives and needs to older people.
- Support for the quality of life of family carers beyond their caring role and for the relationships they have with people with dementia, families and friends.
- Recognition and support for the emotional aspects of caring
- Access to information and help with planning for the future and the unique challenges dementia brings.
- Support to tackle stigma and build dementia friendly communities so we can talk openly about dementia and its impact.
- Carers to have more say in services and how they are designed and run.