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Janet, Tatiana and I welcomed five carers to the group this evening. There was a full session of discussion.

I spoke about the Forever Young Festival at The Stables on 7th September. It follows on from last years successful event – this year it will be even bigger and better. It will run from 11am to 4pm and Reflections will have a stand there. It should be a very good day. More information when available.

I also spoke about the visit from Gaia, from the Greenwich Fire Brigade, who came to our recent Reflections Friendship Group to talk about a new a pilot in Greenwich and 4 other  London Boroughs called Fire, Safe and Well. The Fire Brigade is keen to visit any residents that are likely to be at more risk of fire (for example: people living alone, aged over 60, living with a long term illness or health condition, have a mental health condition). The Fire Brigade will visit the person’s home to provide personalised fire safety advice, installation of a smoke alarm, carbon monoxide alarm and a heat alarm. Unlike a smoke alarm, the heat alarm can be installed in the kitchen and can detect when the temperature in the kitchen rises to an unsafe level, usually before a fire is started eg if a saucepan boils dry.   They can also offer safety advice plus refer people to relevant health and well being services if appropriate. The visits are free. If you want more information, please contact us.

Janet spoke briefly about two carer experiences which had come to her attention.

She informed the group it has been confirmed by the council’s funding manager that Meadows House Residential and Nursing Home (Kidbrooke) is THE dementia  provider in the borough for providing day care. The Meadows is expected to be able to cope with people with severe and challenging dementia.

She also mentioned a carer who had been to the group previously whose husband had recently died. The care in his last weeks had been in both The Woodlands Unit and the Queen Elizabeth (QE) hospital. The carer had reported to Janet she was upset that no one would help her in the last few weeks of his life. Janet had pointed her in the direction of both Advocacy for Older People and PALS both of whom said they could not help. Janet informed the group that if ever they were concerned about the care being delivered to their loved one to be persistent in flagging their concerns. If they couldn’t get help Reflections wanted to know about it. For her part Janet is making enquiries as to why this carer could not be helped by those organisations and who carers can reasonably expect to help them in finding their way round the health systems.

Group discussion:

Heatwave

The recent heatwave had been a problem for several people. Dehydration and loss of appetite can, and does, cause rapidly debilitating effects. Group members made suggestions on how to tempt loved ones to eat and drink. The most effective solution used was to leave small items of food and drink around the rooms being used. This led to nibbling when passing, over time the food disappeared. A member had needed to call out her mum’s Community Treatment Team – who were excellent in providing lots of help and equipment (her mum does not live in Greenwich). The break in the weather appears to have reset everyone to their previous state, with a return of appetite.

Help

Separate from the issues with heat, a member told us about the good work of local social services, who were called out to help when her father-in-law was confused and distressed in the local pharmacy. The result has been an assessment, support in the home, and some more pills.

Change

A common theme was the need to ensure treatment and support was regularly reviewed. People change over time and in response to their environment/weather etc – yesterday’s solutions are not necessarily today’s solutions.

Care homes

We have members caring for loved ones in early/middle/late stages of dementia. This gives the group a wide range of experience. A member who is taking initial steps to find a care home for their mum spoke about the wide range of homes out there. The group were keen to emphasise the need for a home that met their loved ones needs – where the staff were caring and aimed to provide person centred services. It is not the cleanest, tidiest, sweetest smelling, most organised home that necessarily provides the best environment.

Initial experiences of dementia

At the other end of the dementia “journey” we discussed the issues arising when people with dementia initially start to behave somewhat differently. Problems can arise because those around the individual are ignorant of how the dementia is affecting that individual and how they should respond. This can result in denial, confusion, arguments, stress, isolation and depression. Everyone loses. A key suggestion from the group was: knowledge and experience – hard to gain in a short period! Having understanding and being dementia aware can ease everyone’s experience. It is also necessary to consider wether some of the issues can be treated and resolved – depression, for example along with whether how the carer is interacting may be triggering some of the behaviour from the person with dementia.

Anxiety

A common question faced by all members is “when am I going home”. This may well mean that the individual is anxious. ‘Home’ represents familiarity, safety and security. If we are in unfamiliar surrounding, with strangers, we may all feel anxious. Just because someone has lived at the same address for 30 years and are surrounded by loved ones, does not mean they recognise their situation. Coping strategies suggested included: distraction, changing the subject to something more reassuring and familiar; and taking the hint and maybe acting as if “going home”.  This may mean a walk or a drive, thereby reducing stress and (hopefully) enabling a relaxed return to the current home in due course. 

Urine Samples

Finally, for this blog, urine infections can be a common occurrence for some people with dementia. If you have difficulty getting urine samples from your loved one, you might find The Bidet Bowl helpful. More details are here.

We discussed how to cope with family members who, for whatever reasons, are unwilling to take an interest/share the workload caring for someone with dementia. This is clearly a very difficult area. The group suggested a little education can help understanding and may prompt some participation in care or just greater contact.

Food preparation can be an issue for someone with dementia living alone. There was broad support for the use of pre-prepared frozen dinners. The Wiltshire Foods service was suggested as a supplier. For information their web site is here.

Two people at the group have spouses in The Meadows. However, their experiences have been somewhat different. They were able to compare notes and consider the best way to cope with managing their care home experiences. If issues do arise, then there was agreement that the care home manager should be contacted.

There was a similar divergence of experience in using the local advocacy for older people service. Some experiences had been very good, others not so. Information their web site is here.

We discussed how to cope with someone who becomes aggressive. This led onto questions about how do you know when it is the right time for someone to go into care. The group agreed it was best to stay at home as long as possible, so that required an understanding of the support services available and funding issues arising.

We discussed funding care and how some people may be eligible for continuing health care. The NHS has guidance which sets out the principles and processes of the national framework for NHS continuing healthcare and NHS-funded nursing care. You may find it here.