Dementia (health and wellbeing needs in South Tyneside)

The views of people with dementia / carers have been sought via a Memory Loss Survey undertaken between 25 January and 19 February 2024. In total 103 responses were received.

The findings concluded:

• The need to continue to improve pre and post diagnosis support, including better access to information, speedier diagnosis, and enhanced promotion of third sector assets. It should be noted that the survey highlighted good advice is available, whilst other respondents thought not. Therefore, in part, it may be a need to improve where to access information rather than the information that is available.
• The need to continue to join up services which can be fragmented - "often we don't see the same doctor twice and appointments are only for one issue - a holistic approach should be considered."
• The importance that local people place on community-based dementia day services, which provide social interaction and opportunities to learn from the experience of others. Both people with dementia and their carers were highly complementary of these services often attending several, from different organisations each month.
• The need for more one-to-one home-based services, to help maintain quality of life for the person with dementia and support carers breaks.
• The desire for enhanced physical activities to help individuals remain healthy.

The importance that carers placed on social activities to give them breaks and reduce carer breakdown. Detailed discussions highlighted the need for formal respite support to help with difficult or crisis situations. Carers also cited wider carer responsibilities such as caring from grandchildren or wider family members.

Covid-19

Covid-19 was not raised as an issue in the findings of the survey, however service managers highlighted some continued reluctance to attend although once this has been overcome confidence returns. Therefore there are no specific Covid 19 issues.

Memory Loss Survey: 2024

"I have lost my partner who cannot communicate with me, I am stressed by day-to-day changes as he is also terminal/palliative at the moment. I'm constantly having to think on my feet as he gets very confused and has a range of habits now that are very challenging. He won't wash at all or follow any instructions so that's challenging. It goes on and on."

"So many of the general public don't understand."

"It's not just the memory loss...... it's the anger and frustration that impact on life continuously."

"As a carer it affects our life socially."

"Short term memory loss creates problems in all aspects of life.

I've needed to educate myself as a carer."

"It is a strain on family relationships as both parents have disabilities (only one with dementia), it is horrible to see a very intelligent person, who used to do very complex DIY, no longer be able to zip up coat or know where the bathroom is in house."

"I'm a carer for my mam who still lives independently with a lot of background help. I do her shopping, keep check on out of date food in fridge, housework, check on dirty clothes put back in wardrobe, clothes washing, wash her hair, change bed, make sure she's out of bed, taken medication and had meal if I'm at work and she's not coming to my house for meal. Mam's memory loss impacts our lives as she wants to be with me to do anything or she's not that keen to go which means that if I'm not available with work commitments she has no company or stimulation, or she'll have a jaunt out on the metro. I have reluctantly put a tracker on her keys for safety."

"Sometimes I have nowhere to turn or know where to turn when my mam is having a bad day. I find it hard to continue with work and end up having to take a day off. I've had to reduce my hours at work. I get calls asking how my mam is getting on but not how am I getting on or family. I've no siblings so can't share the load when I'm not good myself."

Most services do not work for my family as they are heavily South Shields centric. My parents do not drive and using public transport is not suitable now due to stage of dementia and also lack of public transport. "As memory loss builds up you can't plan anything you have to take each day as it comes."

I'm losing the person I love and cherish slowly and distressfully. The person we knew is leaving us with a chasm in our life that will never be replaced.

"Lots of running to and from appointments, basically doing everything."