Real stories

We need better care home support for people at all stages of dementia

We must work together to make some positive changes to the infrastructure within the care system.

I want to start with expressing how difficult we have found our journey.

My dad Michael is a central part of a loving family, has been a good husband and a good father.

Over 10 years ago, he started showing some signs of confusion and forgetfulness and was diagnosed with Alzheimer’s.

Difficult decision

Four years ago, our social worker introduced us to Rainbow Day Care, which provides respite stimulation and social interaction for those affected by dementia.

Attending these day care sessions slowed down and prevented Dad’s Alzheimer’s developing as quickly as it could have done.

His symptoms progressed at a level pace. But around 18 months ago, they started to accelerate. The changes became more rapid.

And when it became apparent that Dad’s Alzheimer’s had progressed and he would need to move into a care home, it was a painful decision, especially for Mum.

Care home search

Searching for a home that could give Dad the care he needs in the later stages of dementia was a sobering process.

Homes state on their websites that they care for people with dementia, but caring for someone in later stages is very different. Many care homes do not have the staff who are qualified to look after them.

At no point since Dad was diagnosed has anyone provided any guidance or support on what happens next in the journey of caring for someone with Alzheimer’s.

We spent considerable time visiting care homes and reviewing Care Quality Commission reports. They were often out of date and did not provide adequate information to make an informed decision.

The only assessment that takes place before someone enters a care home is the risk assessment. There is no opportunity for the resident to spend time in the home to see how they relate to it.

When Dad first entered his care home, there were many issues trying to settle him into a routine.

Rollercoaster of emotions

It has been an extremely stressful time. 

Since being in a care home, Dad’s Alzheimer’s has progressed quickly, and his behaviour has changed.

It is a rollercoaster when caring for someone with Alzheimer’s – the care they require never ends.

It’s exhausting and emotionally draining. We are currently working with the care home and healthcare professionals to diagnose if he can be moved to nursing care home.

Things must change 

The care provided in homes is dependent on the attitude and training of the staff.

We recognise that many care workers love their jobs but are not always provided with the resources, training, or tools to carry out their roles to their full potential.

The provision of activities and stimulation for residents in care home also needs to be developed.

It would be great if the services offered by facilities like Rainbow Day Care were more widely available.

I’ve been so impacted by what I’ve seen in care homes that I’d like to use my skills to change things.

My aim is to work with charities and or companies that want to make a difference to those living and working in care.

I’d like to help make positive changes to the communications systems used by care homes. And improve the journey families go on while trying to look after and plan care for their loved ones.

I want to be there to support others along this path.