B: Starting the Journey
B1: Dementia-related UK website links
B2: In-depth further reading resources
B3: Doctors’ Surgery
B4: Doctors - Out of Hours
B5: Pharmacist at Doctors
B6: Medication
B7: Social Services
B8: Food
B9: Equipment/Aids
B10: Stone House
B11: Personal Care
B1: Dementia related UK website links
Age UK Shropshire services ; Age UK Home page; Alzheimer’s Society local services; Alzheimer’s Society Home page; Carers Trust; Carers UK; Dementia UK; Dementia Carers UK; Government Department of Health and Social Care; NHS; Shropshire Carers
B2: In-depth further reading resources
AgeUK information and advice section and Alzheimer’s Society publications and booklets
B3: Doctors’ Surgery
Before receiving a dementia diagnosis
Before receiving a dementia diagnosis, generally the surgery would want to know about 12 months’ worth of symptoms during which time bloods would be taken to see if any organic causes exist and also to do some memory testing.
If you suspect something may be wrong, don’t delay as at present there is a 4-month wait to get to access the Dementia Assessment Support Services (formerly the ‘Memory Team’) so that they can do memory testing. Potentially, the team can then prescribe medication. After the person living with dementia has completed a three-month trial and had a check, the information goes back to the GP in order to continue the medication as standard.
A confidential list of local people living with dementia is kept at the Doctors’ Surgery.
If a patient refuses to go to the doctor, Teresa is able to do home visits. The Lasting Power of Attorney means you can make choices for the person living with dementia but they still might not engage. Teresa encourages carers to reach out for support if a crisis point is reached.
The Integrated Community Services (ICS) team focus on a “home first” approach for people living with dementia to maximise their independence. The team can provide short-term support at home after discharged from hospital or to avoid unnecessary admission to hospital.
Don’t forget to sign up to the Shropshire Carers Service - because if a Carer becomes unwell help can be made available.
Routine blood tests are recommended as other conditions (such as urinary infection, fatigue, etc) may be present so best to check on those
Social Prescribers can also be involved. They can have a chat with you and suggest local support groups.
It would be helpful for you to provide the Doctors’ Surgery with a copy of the Lasting Power of Attorney.
Informing the GP of a dementia diagnosis and your Carer status
Advanced Nurse Practitioner, Teresa Smith, at the Doctors’ Surgery, has a particular interest in Dementia. She recommends making sure the Doctors’ Surgery is informed of a dementia diagnosis and details of who is caring for the person with dementia. The ‘800 Club’ can send you a standard letter for you to complete and send to the Doctors’ Surgery.
The reason this is useful is because it enables the doctor or hospital to speak to the Carer on behalf of the person with dementia, if needed, and it more easily allows for the Carer to be present during consultations at the Doctors/Hospital.
When making an appointment at the Doctors’ Surgery for the person with dementia it is often better to make the appointment for the afternoon because of the time it can take to get organised. You could explain to the surgery so that they know why you’re making that request.
Note that you also need to inform the DVLA about the person living with dementia. Dementia is a medical condition that needs to be declared to the DVLA, however, having dementia doesn’t necessarily mean the person will lose his/her licence.
CBD – possible help managing behavioural symptoms
Please note you should always consult a GP before use, as CBD may react with other medication.
Cannabidiol (CBD) – this is the legalised cannabis for use in pain management and anxiety which has anecdotally proved helpful to some people with dementia. CBD doesn't contain tetrahydrocannabinol (THC), the psychoactive ingredient found in marijuana that produces a high. There are no research studies that prove CBD is effective for those living with dementia, however, some studies suggest it could help to manage a few behavioural symptoms such as agitation.
The usual CBD formulation is oil, but CBD is also sold as an extract, a vaporised liquid and an oil-based capsule. Food, sweets (‘gummies’) and drinks are among the many CBD-infused products available online, from websites such as Amazon, and in store or online from Boots the Chemist.
B4: Doctors - Out of Hours
When your local surgery is closed call 111. This gets you through to a call centre with a GP present. You will probably speak to a doctor once the 111 operator has taken you through a short relevant ‘triage’ questionnaire.
If a doctor is required to visit at home, then it is likely that ShropDoc will attend. ShropDoc provides 'out of hours' GP care to patients referred via 111.
B5: Pharmacist at Doctors (at Bishop’s Castle Surgery)
Katherine Lowe is a pharmacist at Bishop’s Castle practice on Mondays and Thursdays and has a background in medicine for the elderly. She supports our surgery in reviewing patient’s pain medication. Julie Bates is in an outreach role Monday to Friday.
Julie will take self-referrals from the ‘800 club’ and this can be done via the surgery practice. Her e-mail is julie.bates21@nhs.net
B6: Medication
Prescription medication
Prescribing medication usually starts after someone receives a dementia diagnosis. The Dementia Assessment Support Services team (formally the ‘Memory Team’) will begin the process and the prescription of medication. They will assess the patient’s response to the medication and when they are stable, the team will transfer prescribing to the GP.
It can be a long process to get it right and the carer will usually be involved in the discussions to get a good balance between benefits and side-effects.
It is best to keep a paper record somewhere easy to find of which medicines are to be taken, when and how much. This can help because often there are so many things to remember and medication can run out at different times, or if the carer becomes incapacitated and others need to provide temporary support with medication. Consider also if it would be beneficial to put the medication in a lockable cupboard if you think there may be a risk.
It is best to establish a routine early on, so that certain tablets are associated with breakfast, night-time etc. Some drugs work best on an empty stomach, some a full stomach, so timing has an importance – but the most important thing is that someone actually takes their prescribed drugs. So, take advantage if the person wants them or allows you to give the drugs to them. If you need further advice then Julie or Catherine are available.
Also speak to them if you are thinking of combining medications ie using Ibuprofen or drugs for high blood pressure, alongside the dementia medication. Katherine will check that particular patient’s records and advise.
Refusing to take medication
This is usually due to one of two things; a decision influenced by the media, friends and family, or unintentionally forgetting to take the medication.
Some tips for remembering and persuading to take medication are: using electronic pill dispensers; differentiate different days with different colours; using blister packs for ease, playing an audio recording of their GP reminding them what to take; a list to show what to take on headed paper.
The Alzheimer’s Society has some ideas to consider if someone is refusing to take their medication: https://www.alzheimers.org.uk/get-support/daily-living/refusing-to-take-medication
Physical problems with the intake of oral medication
At least 4 out of 10 people face problems with the intake of oral medication. If solid tablets become a problem, some can be prescribed in liquid form.
Please note: To assist with swallowing, many people use foods such as yoghurt, fruit puree or jam. None of these substances have been designed for use with medications and can impact the efficacy, side effect profile and absorption of the drug. Take pharmacy/GP advice about the best to do and get that in writing.
Dementia and depression
If the person is also suffering from depression it can continue despite medication for dementia. It can sometimes be difficult to tell the difference between the two.
Anti-psychotic drugs are used for ‘dis-ordered’ thinking. Sometimes used in dementia patients but there is an increased risk of strokes. There is a comprehensive NHS toolkit to prescribing anti-psychotic drugs.
What might ‘magnify’ dementia
There are many things that can magnify dementia, such as pain, low mood, stress and poor sleep. The Live well with pain website is a useful support.
B7: Social Services
If you wish to refer someone to respite care the first point of contact should be Social Services. Their contact number available 9.00 am – 5.00 pm is 0345 6789 004. During other hours call 0345 6789 040.
B8: Food and tips
Food provision
Consider organising food deliveries from suppliers/supermarkets. The person with dementia may need supervision or help to prepare microwavable meals.
Home cooked food deliveries are available from Marlon in Lydbury North, email: liz.moran1969@btinternet.com
Wiltshire Farm Foods (complete microwavable meals for fridge/freezer) can be purchased from https://www.wiltshirefarmfoods.com/) tel: 0800 077 3100. They do mini adult meals for smaller appetites.
Parsley Box (complete microwavable meals, with a 6-month shelf life out of fridge) can be purchased from https://www.parsleybox.com/ ) tel: 0131 326 0131.
Sainsbury’s and M&S do mini adult microwavable meals for smaller appetites. A number of supermarkets also do child microwavable meals, sweetened with things other than sugar.
Note: There is currently no Meals-on-Wheels service in Bishop’s Castle.
Appetite changes
When appetite is low and weight loss is occurring, try offering high-calorie options eg cream and butter in mashed potato, regular snacks between meals such as milkshakes, cheese, yoghurt, rice pudding, jelly, Horlicks and hot chocolate, desserts after meals. For energy, something like Floravital (from chemists) can help. Sometimes liquid intake is reduced so try different juices, cordials, water heavy foods such as cucumber or jelly. And palates can change, try introducing sweeter foods or using lo-salt and sugar-free ranges to see what’s preferred.
Helpful utensils
Various things available in the ‘dementia range’ cutlery, plates and bowls.
Alzproducts do a range of equipment for kitchen and dining.
Pasta bowls may be easier to eat from than plates.
The ‘Knork’ cutting fork is available on Amazon. It’s useful for independent eating with no sharp edges.
B9: Equipment/Aids/Tips to help
The Alzheimer’s Society website Shop (find it on their top menu) offers a wide range of useful equipment, gadgets, accessories and activities which may help. A visual card game called Ouisi (about £30) has been recommended by one of our carers, to encourage conversation, observation and connection. The game can be applied to different situations.
Alzproducts also do a wide range of equipment for many different situations - bathroom and toilet, remote controls, safety at home, etc.
Glow in the Dark tape could help with stair edges or door frames/handles. It is non-slip and can be used to highlight difference in edges/heights. Lots of different brands available the web.
You could use something like Alexa or Google to more easily access favourite radio stations, BBC sounds, etc, set their speakers to make reminders for doing things.
A magnetic white board on the fridge has also been used to remind dates/food etc
If listening to bird song is of interest there is an app called Merlin that is very good.
If you feel it is appropriate to have some control over what is worn, gradually reduce what can be worn by removing inappropriate clothes and placing the right clothes in wardrobes eg only warm clothes.
One suggested system for not losing keys is to have them on an oversized or distinct key ring, keep them on an agreed hook or in a special bowl at home, or use a lanyard to wear keys around the neck.
Tips for when those with dementia go out solo and travel further afield:
· Keep information cards in their pockets (their first name, your contact number)
· Have both the person and Carer wear a medical bracelet (SOS talisman)
· Add their name and your contact details on their stick or walker – ‘If found …’
· If you live with a person with dementia, you could fit a shop bell to front and back doors to detect when people leave or fit an alarm for when doors open
· Set motion sensors for night-time
· Some GPS watches have fall sensors
· Use a tracker (here’s an article from the Independent newspaper June 2024 about the best trackers). You can fit some to outdoor clothing or shoes, their keys, or put in a wallet or purse
· There is subscription phone tracking available
One carer has been using a tracker called Stray Star. The cost is about £180 and has many useful features – found it to have very good clear instructions and a good help service. They have been very impressed.
Another carer talked about a watch called CPR guardian – and they would not recommend it (we don’t have a note about why).
B10: Coverage Care Stonehouse
The whole site is referred to as Coverage Care Stonehouse (a not for profit company) runs the home part and a dementia element, and the NHS runs the hospital part.
The company Coverage Care has been a not-for-profit organisation since 1997. They have 12 homes throughout Shropshire. Stonehouse has 40 places for residential care ie (non-nursing) and Stonehouse’s Willow unit has 14 units for dementia. They can offer respite care but only if the beds are available. Training about dementia is carried out throughout Stonehouse. Willow has been re-fitted by a specialist company to be dementia-friendly. They cannot provide day care at the moment. They cannot provide ongoing nursing care (nearest to Bishop’s Castle is St Nicholas in Churchstoke) but do provide end-of-life care if the circumstances allow.
Please call Stonehouse on 01588 638487 for care costs.
B11: Personal Care
If the person is not washing, then body wipes can help maintain a basic level of hygiene. There are a variety of adult wet wipes or ‘drench’ wipes for adults. These can be purchase via Amazon or other retailers.
Mobility Plus has been recommended for creating wet rooms. Other local builders will be able to help also, they must consider adding features for those whose mobility is challenged.
Transform in Bishop’s Castle offers both hairdressing and barbering services.
Marches Footcare and Ear Wax Clinic in Bishop’s Castle.