The challenge and strategy tools

This tool has been built to support the care of those living with dementia by social prescribers

You can explore this resource in any order or click “next” to move through the sections in the suggested order

Navigate the challenges

  • Introduction
  • Pre-contact and referral
  • First contact
  • Building trust and rapport
  • Identifying needs
  • Identifying and signposting resources
  • Engaging people living with dementia
  • Your emotional reactions
  • Discharge and continuity of care
  • Professional development and training

Navigate the challenges
  • Introduction
  • Pre-contact and referral
  • First contact
  • Building trust and rapport
  • Identifying needs
  • Identifying and signposting resources
  • Engaging people living with dementia
  • Your emotional reactions
  • Discharge and continuity of care
  • Professional development and training

An introduction to using this tool

An introduction to using this tool

Welcome

You will see titles like this when using this tool. These are the challenges you may face…

Then below text like this you will find lists of strategies…

This challenge and strategy tool is designed for social prescribers supporting GP surgeries & local authorities… or anyone new to dementia.

We have created this tool using the knowledge of a co-creative group of Social Prescribers we have worked with across this study. The strategies we list have been recommended by those working as social prescribers.

At the time of publishing social prescribing services are by no means consistent across the UK but we have included advice from social prescribing practitioners and dementia research teams to help as many people as possible.

If you have any suggestions or additions for this tool please do get in touch. To contact the UK research team, please email: [email protected] 

Are you living with dementia?

We are here to help you find your way forward with dementia. See articles written with others living with dementia that can be accessed here

Are you a care worker?

We are here to support you finding a way forward with dementia for your clients. See articles written with other healthcare professionals on this page

Are you a carer?

We are here to help you find your way forward with dementia. We have numerous articles written with other carers that can be accessed here

You can also set up a personalised toolkit on Forward with Dementia

Save articles and practical tips in the form of to-do’s that are relevant to you in your personal toolkit, that you can share, print and keep here 

Pre-contact and the referral

Pre-contact and the referral

The Challenge

You lack confidence/ experience in dementia.

Strategies you may want to employ
Consider expertise within your team to get guidance. In some cases, social
prescribers have found it helpful to pass the referral to a more experienced
colleagues in their team
Be pro-active, not reactive. Do some preliminary research (online and in
person), finding the charities or the statutory services that your patient can
be signposted to. In most instances your locality will have a web-based
directory where you can find what is going on. Sometimes, GPs, PCNs, or
charities have directories that they have collated, or the information might
be available if you speak with others in the team.
See the section on professional development at the end of this table.
The Challenge

You are passed on a referral with little to no information on the patient’s situation

Strategies you may want to employ
If you work in PCNs, get access to the GP records. You can see what was
said during the consultation and what prompted the referral. However,
check with the patient that the need identified in the original referral is
still unaddressed or if anything has changed, as they might need
something else
If you work in a charity, you will be relying on information relayed to you by
the patient, which may be inaccurate. Consider involving
caregivers/families in the conversations
The Challenge

Your referral is placed in a long waiting list, due to the amount of referrals you receive

Strategies you may want to employ

Prioritise referrals in a matter of urgency. Urgency could be risk of homelessness, no food, no gas and electric.
High priority could be struggling financially (because of lack of attendance in place). Moderate could be an interest in social groups or activities

The Challenge

You are unsure who you will speak to when contacting the patient

Strategies you may want to employ

You may want to explore whether legal arrangements are in place, such as lasting power of attorney or who gave consent in the referral process. This will clarify who you will be having discussions with and most importantly who will have a final say in any course of action.

The Challenge

You are unsure about what is going on in the community to support your patient

Strategies you may want to employ

Social prescribers often report feeling “Jack of all trades, masters of none”. You may want to consider signing up to newsletter and mailing lists of different/relevant organisations such as the National Academy for Social Prescribing.

Getting in touch at intervals with organisations, to see if there is anything new that you have missed, is also helpful.

The Challenge

You want to make sure that the patient knows you are going to contact or ring them

Strategies you may want to employ

You may want to consider posting a letter via regular mail. Not only are older generations more familiar with regular mail than e-mail, but also it is best for people living with dementia to have a physical/readily available reminder about the appointment.

Danielle’s social prescribing story : Pre contact preparation

Danielle’s social prescribing story : Pre contact preparation

Danielle is a social prescribing link worker in a PCN. They share their experience of routine pre-contact stages and some insight and tips on how to prepare to support a client with dementia who has been referred to them.

First contact or meeting

First contact or meeting

The challenge

You realise that the patient has communication issues (e.g., will not be able to relay accurate information)

Strategies you may want to employ
Consider going back to the GP and asking them to make a referral for the caregiver, so you can support the couple. Remember that dementia is a systemic issue that does not affect the person only, but also (and sometimes even more) the caregiver/family.

Whilst operating in a person-centred approach is key to social prescribing, it is equally important not to overlook the carer and how their health and wellbeing also affects the person living with dementia

Suggest a face-to-face appointment, either at the surgery (saves time and resources), at the patient’s home (if the person cannot travel) or at a community place. Especially in cases of mid to late-stage dementia, it is advisable to have the carer/family present
Be aware that there may language barriers with non-native English speakers. The patient may have reached a point in their life where they spoke great English, but because of the dementia they are now reversing back to their native language. You may want to consider using a translator (if available), although some find it more effective to involve a family member because they know the person better
The challenge

You realise that the patient may have issues around capacity

Strategies you may want to employ
It might be advisable to close the referral, let the GP know and push forward for a mental capacity assessment. This will allow for appropriate support arrangements to be in place, e.g., appointing a mental capacity advocate on the patient’s behalf
The challenge

You realise that your patient may have dementia, but a diagnosis is not in place

Strategies you may want to employ
Social prescribers have reported instances where they started working with a patient without a formal diagnosis of dementia, and then realised that actually they do not retain the information from previous consultations, or they may seem a little bit confused.

At the same time, it is very hard, especially when people reach a certain age, to know what normal forgetfulness or normal changes in behaviour is and what is actually a dementia concern.

It is advised to refer the patient for a memory assessment, to initiate the process of getting a diagnosis, because that is the starting point to make them eligible for further support. Remember, no diagnosis equals no adequate support in place

The challenge

You are unsure whether to use the word “dementia” or not

Strategies you may want to employ
Be aware that not every person living with dementia wants to hear/use the term “dementia”. In fact, in some language, the word “dementia” does not exist. Sometimes, you may read information in the patient’s referral (or notes) or have a feeling/doubt about whether it is appropriate to use the word dementia. It may be helpful to involve the caregiver or family of the person to learn about if and how dementia needs to be approached/discussed, if at all. Sometimes, to offer support, you do not need to use the word at all.
The challenge

The patient or the caregiver (family) refuses your support when you first contact them

Strategies you may want to employ
Consider offering a six-month courtesy call. Be aware that your patient (and their carers) may have been referred to you upon receiving a diagnosis and be still trying to absorb all the information and work out their grief: https://www.alzheimers.org.uk/get-support/help-dementia-care/understanding-denial-lack-of-insight
Consider offering to send an information pack via email or the post, with relevant information and contacts, so the person can get back to you in their own time. The info pack needs to have information accessible for both the person living with dementia and the carer, and always be up to date.
Be aware that people living with dementia experience “rejection to care” (https://www.scie.org.uk/dementia/living-with-dementia/difficult-situations/refusing-help.asp). Also, their cognition fluctuates depending on days and times of the day. You may find it helpful to offer to call back on another day, potentially trying at a different time and/or to talk to a carer/family member.

Sometimes, it might be helpful to use terminology a little bit differently to kind of fit the person’s needs, to kind of ease them in. For example, a patient may say that all they need is a cleaner. So instead of presenting yourself as a social prescriber, try to say you are there for the purposes of cleaning (https://www.alzheimers.org.uk/blog/lying-to-someone-with-dementia). Ultimately, an initial “no” may not be definitive, so do not close the referral at first rejection, but try a couple of times more

You may want to consider that the original referral came at a point of crisis, and by the time you make contact with the patient, the crisis may have resolved. Sometimes people just need to know there is someone if they need it
Try to describe your role rather than saying the name of the role. A lot of people who hear the word social prescriber may confuse it with social worker or someone who prescribes medications
Ultimately, remember that you cannot impose support on anyone, so it is the patient’s decision whether they want to engage.
The challenge

The patient does not remember they have been referred to you or having consented to the referral

Strategies you may want to employ

You may want to go back to the person who originally referred the patient (e.g., GP) to double check.

Munjal’s social prescribing story : Making first client contact

Munjal’s social prescribing story : Making first client contact

Munjal is a social prescribing link worker for GPs in a large city in Northwest England. Munjal shares experiences and suggestions to address the challenges of people with dementia struggling to engage on first contact.

Finding trust and rapport

Finding trust and rapport

The challenge

You are anxious that you may not be able to develop rapport with your patient

Strategies you may want to employ
Try to establish an equal relationship, conveying the message that you are a partner in care and that you and your patient are a team. Show them you are human, that you do not know everything about anything (e.g. saying “I don’t know what that is, but I’ll go and find it out with you and we will do some research together”.
You may want to be aware that your first call(s) need to be longer with a patient living with dementia. So be flexible and dedicate a good set of time to the call. Be open to have a bit of like a general chit chat first, to talk about different topics, and that you are actively listening to get the person engaged
Be patient and compassionate. Sometimes you might be able to recognise that your patient is not in that space with you, that their mind is somewhere else. Accept it, instead of trying to bring them back to reality, because that helps them feel safe with you.
Be adaptable and sensitive. If you ask a question and the patient is not receptive at that time, leave it, then ask it another time. Bringing up a certain sensitive topic can create frustration on the person, so being able to recognise and be sensitive towards that is key
Show an interest in the person. So, for example, if they’ve got a dog, ask about the dog and what is its name, what kind of dog is it. The next time you call, be mindful to ask, how’s e.g., Sherry doing
Be reliable. For example, phone people when you say you’re going to phone, because people can be really disheartened if you do not
Many social prescribers find it more conducive to building rapport when they hold very honest, practical conversations with patients. This helps patients have a clearer understanding of what is “on the table”, what they should expect and what options are available to them
Dionne’s social prescribing story : Building rapport for clients with dementia

Dionne’s social prescribing story : Building rapport for clients with dementia

Dionne is a social prescribing link worker in a large city in the West Midlands. She shares her experience of building rapport with clients with dementia.

Identifying needs

Identifying needs

The challenge

You want to identify your patient’s needs correctly

Strategies you may want to employ
Sometimes, the reason for the referral might be different than the actual need of the patient. It is helpful to hear from the patient’s side whether they agree with what the referral has brought to your attention.

Sometimes, they might even be unaware or unaccepting of underlying needs, especially when it comes to mental health. It is important to remember that people with dementia (and their families) experience anxiety, depression and suicidal thoughts/ideation much more frequently that people without dementia. These symptoms (and subsequent support need) might be trickier to identify than physical health and social needs. 

Sometimes, information relayed by the patient may be unreliable. You may consider a visit in their home. Social prescribers report that seeing the person in their own environment reveals much more that any remote conversation with them. Some clues indicating unaddressed needs may be their appearance (clothes, keeping unkempt), food (quantity and quality available), the way they move is important, their environment (e.g., is there any hoarding?)

There are strategies to check these things without being intrusive, for example, by asking for a cup of tea and checking the quality of milk or glancing inside the fridge when opened

To check for the consistency of answers, ask a question at the beginning of the conversation and then ask again towards the end and see if they had any recall that they had already been asked and if they gave the same answer
The challenge

You find it difficult to identify what the need of your patient is, what they really want

Strategies you may want to employ
Some people may struggle to identify their need/priority. You may commonly hear your patient say “I don’t know what I need. No one’s asked me this before. I have no clue where to start”.

It might be helpful to invite them to tell their background story, what has been happening for the past six months. Something important will come up. Some social prescribers find a technique called motivational interviewing helpful: https://motivationalinterviewing.org/understanding-motivational-interviewing

When the person is telling you their story, you will notice certain themes that they have brought up. It is helpful to summarise and ask the patient whether they agree that these issues/needs are recurring and might be important to address
The challenge

Your patient comes up with many needs and they/you do not know which to prioritise

Strategies you may want to employ
You may want to go through a prioritisation process. Ask the person what the most important thing to them is right now, so that you can finetune their needs. You will find that usually by addressing a core need, a domino effect will be set in motion and other needs will automatically be addressed too. If there is time/capacity, once the priority need is addressed, you may want to consider others.
Claire’s story : Identifying needs from underserved communities

Claire’s story : Identifying needs from underserved communities

Clare is a social prescribing link worker that works within a PCN in a large metropolitan area. She sometimes gets referrals for clients from underserved communities, including, for example, the South Asian community.

Signposting resources

Signposting resources

The challenge

There are not relevant/appropriate support services/resources for your patient locally

Strategies you may want to employ
Be aware of what is going on in surrounding areas, so you can refer the patient to resources/people in a different locality with minimal travel time
The challenge

Your patient has a specific interest/need and you are unsure if an activity/resource/organisation can help/is effective

Strategies you may want to employ
Be aware that information posted online or on leaflets might not be up to date. Go in person to speak to the relevant people. If it is an activity/group, attend one session, as it might give you indication if it responds to your patient’s needs.

You may find something exciting and new yourself. Establishing links with people in the community will facilitate future referrals too.

Look out/search for the evidence base. For example, if your patient is interested in physical exercise classes, look for the literature that has been published in that area, so you can identify what has been proven to be effective. This will also reassure you that you are suggesting activities based on evidence of effectiveness.

Remember to look for evidence on scientific/reliable sources. For example, on https://scholar.google.com/ , you can input the main words such as “exercise” and “dementia” to identify published literature in this area

The challenge

You have identified support, but the patient has been placed on a long waiting list

Strategies you may want to employ
You may want to offer bridging that gap in time, to keep the momentum going, so that you do not risk losing the patient along the way. Try asking them if there is anything that you can help with whilst they are waiting. There might be some prep/preliminary work that you can help with (e.g., filling in forms)
The challenge

You have signposted the patient to a service, but they have failed to get back to the patient

Strategies you may want to employ
You may want to contact the service on behalf of the patient to gently chase it up. It may be also helpful, before you refer a patient to an organisation, to check their own waiting lists. If these are too long, you might want to look for alternatives before signposting your patient
Tony’s social prescribing story : Identifying community resources

Tony’s social prescribing story : Identifying community resources

Tony is a Care Coordinator working in a PCN in rural Southwest England. Tony shares his experience of identifying resources in the community to meet the needs of his clients with dementia.

Engaging people living with dementia

Engaging people living with dementia

The challenge

Your patient is resistant to engage in the activity you offered

Strategies you may want to employ
Some people say “I don’t want to do that”, as opposed to “I am afraid I can’t do it very well”. You may want to consider exploring barriers to engagement, for example, through motivational interviewing: https://motivationalinterviewing.org/understanding-motivational-interviewing. You may find that the patient is experiencing barriers that do not enable engagement in the activity.

Common barriers include mobility/transport, finance, and bereavement. If you know the barriers, you can work to address them. In some instances, e.g., if the patient lacks confidence to make that first step in joining an activity, If you have capacity, you may want to consider accompanying the person during their first session

It is common experience to have patients who have an attitude of “I’ve been there, tried that. I’ve done that like I’ve done that before”. If that is the case, you may want to explore the issue to build that motivation.

Questions like “how long ago did you try? What’s different now? Would you be against trying that again?” can help you explore their preparedness. Suggestions like “Let’s have a little look at amending that, adapting it, adapting it slightly” can win their cooperation. Alternatives like “you can’t do XY you said, but could you do a B&C. What does that look like? Let’s have a look and try” can challenge their resistance.

There have been instances where the patient with dementia refused to do e.g., an activity, but their carer/family was adamant that they should do it. Consider always the voice of the patient, as social prescribing is person-centred, unless the caregiver/family have power of attorney. In any case, avoid confrontation, and try to be as inclusive as you can of everyone in the decision-making process
Have you considered whether the service/activity is culture-relevant to the patient? In particular, if the patient is from a different background, mainstream dementia services might not respond to their needs.

For example, a person living with dementia from an ethnic minority might revert back to a time where mixing with other cultures was not appropriate/common, so they might be resistant to engage in a dementia café where most attendees are not from their community. Consider demographic factors and gender roles as well.

Social prescribers report that men from older generations may be hesitant to ask for help. Some people do not consider themselves to be carers. Ideally, you may want to address culture by asking your patient about religion/ethnicity/gender identity.

Just be aware that these may be sensitive topics. It is also important not to assume that all people from a specific community will want to attend culture-specific activities/groups, and prefer mixing with others

Some people living with dementia do not want to be involved in dementia groups/activities. May report not wanting to see what they will be like down the line. In line with the ethos of person-centredness, it is good practice to be open/prepared to signpost your patient to non-dementia-specific resources as well.
The challenge

The patient has forgotten about previous calls/sessions or needs reminders about decisions you previously agreed upon

Strategies you may want to employ
Starting/ending consultations with recap summaries might be helpful. You may it helpful to ask the patient to write some things down and to place the paper in a specific place and/or sending emails to caregivers/families. Include a list of agreed actions.

This will act as a reminder but also prompt action planning. To safeguard you, it may be also helpful to check with them ongoingly that you have their consent and to record in writing whether the patient has declined anything

The challenge

You struggle to keep your patient motivated to engage with you

Strategies you may want to employ
Clearly state that the patient has control in the present and make them feel empowered. You may want to explain that it is important to be proactive in the present, to look at what the options are, so that the person is in charge of making decisions.

On the contrary, control is taken away from the person if things are left unaddressed and something has to be put in place as an emergency. Some strategies that work to make patients empowered are asking them how they would like you to communicate with them, giving them options (e.g., three links to activities), asking them to check which one they would like to engage with versus referring them directly

It may help to take baby steps with your patient. Lower your expectations and understand that the first goal that you might want to agree with them is that they will answer the phone when you make appointments. When you have that initial goal achieved, you can slowly build on.
Try to give your patient a vision with questions like “What would that give them? What would their life look like if they had done that? What would their family and friends see? What would they say about them? What would they observe if everything was different and how they wanted it to be? Or how would it benefit their relationship?
The challenge

You struggle to speak to the person as the carer is talking over them

Strategies you may want to employ
Many social prescribers report that carers are often present in consultations and sometimes they take over. To make sure that the focus is on the person living with dementia, set clear ground rules at the beginning, saying you will direct questions to the person and inviting the care to only fill in the gaps when needed.
The challenge

The carer is gatekeeping and resisting to let the patient engage in activities

Strategies you may want to employ
You may get the carer onboard by explaining that anything that you are doing is in the best interests of both the person and them. For example, that they are also going to benefit from the person living with dementia being more socially active or taking part in community events. They might have extra respite time or social opportunities with other carers
The challenge

You are asked questions about areas that are out of your remit

Strategies you may want to employ
Social prescribers have reported being frequently asked questions e.g., in the medical area. This might be due to a link with primary care and wearing an NHS badge. Other than explaining roles clearly, a quick strategy to escape these questions is to pretend to not know the answers
Trish’s social prescribing story : Engaging a client with social prescribing

Trish’s social prescribing story : Engaging a client with social prescribing

Trish, a social prescriber working in a third sector organisation in the East of England discusses barriers that dementia can pose when supporting her clients.

Emotional reactions

Emotional reactions

The challenge

You are anxious that the patient becomes overdependent on your support

Strategies you may want to employ
Experience suggests that normally there will be an initial introductory phase and then there will be a spike of activity. And then it will inevitably plateau and eventually subside, as patients will start to adjust to the situation, or their circumstances will change
The challenge

You struggle emotionally when hearing stories from patients/caregivers

Strategies you may want to employ
You may want to create your own space for reflection. Social prescribers tend to have packed schedules, to go through the hustle and bustle with no time to actually reflect on, e.g., what is actually going on in the patient’s headspace, how that makes me feel, what support/infrastructure I need to be able to support the patient better whilst safeguarding my own wellbeing as a worker
Learn about resources for social prescribers’ emotional wellbeing. Some examples include mentoring schemes, supervision, team meetings, informal catch ups with colleagues, WhatsApp groups, peer support groups, drop-in sessions.

These are all viable venues where to present cases to reflect on practice and to find support on those type of cases that might be difficult.  It is important to have a system in place to support you emotionally, as social prescribers have often reported getting upset, in particular with difficult cases and when they work in isolation from home

Cat’s social prescribing story : Safeguarding your emotional wellbeing

Cat’s social prescribing story : Safeguarding your emotional wellbeing

Cat is a Health and Wellbeing Coach. She shares her experience of the impact on her emotional wellbeing of supporting clients with dementia and their families, and some strategies and tips that can help.

Discharge and continuity of care

Discharge and continuity of care

The challenge

You want to check how your previous patient is doing

Strategies you may want to employ
Set up a catch-up appointment/call. If possible, ask to be included in the patient’s annual dementia review (https://www.alzheimers.org.uk/get-support/help-with-dementia-care/gp-annual-review-person-dementia)
The challenge

At the time of discharge, you notice that the patient has become over reliant on your support (e.g., they come up with a “new” need)

Strategies you may want to employ
You may consider not closing the referral and offering the patient to get in contact with the surgery/organisation again, if they need support in the future
Set boundaries and be aware that leaving your phone number or email may send the wrong message. Instead, have people go through the switchboard team, if possible. They might help sometimes, saying you are not available, so patients learn you are not there for them always
To avoid dependency, it may help to rotate, so that the same patients are not seen by the same social prescriber on subsequent referrals.
Try to be really honest and upfront yet tactful, clarifying that you are not there for long term support, that you are not a mental health professional, counsellors, the befriending service. Your job is to help them to engage with the services that are specialised. Remember that although it might be difficult to say, you would be doing a disservice by keeping the patient on long term.
You may use motivational interviewing (https://motivationalinterviewing.org/understanding-motivational-interviewing) to help the patient arrive at the conclusion that they do not need your support any longer
The challenge

You are anxious because you are discharging a patient who lives independently and does not receive much support from family

Strategies you may want to employ
You may want to create a diary with a plan for continuing support. Try to identify an organisation in the community that offer to visit people in their homes, spend some time with them, and/or take them out.

Include contacts from this organisation in the patient’s plan. Share with the organisation the plan that you have created with the patient, client’s information and everything that you have done (with their consent).

Let the organisation take over. Agree with the organisation that if the patient needs further social prescribing, they could get in touch with you directly and you could just step back in. This strategy should reduce your and your patient’s anxiety about discharge

Roy’s social prescribing story : Avoiding over dependency

Roy’s social prescribing story : Avoiding over dependency

Roy takes us through his experience of working with clients living with dementia and the issues of overdependency on the support that he provides.

Development and training

Development and training

The challenge

You want to keep up to date with dementia

Strategies you may want to employ
If you have not received basic dementia training, it may be essential to sign up for a course. Dementias present in such a wide range of symptoms and behaviours that it is essential for social prescribers to have awareness of the different types of dementia and the way they might affects patients and families, as well as your own provision of support.

Some elements of trainings that social prescribers have found helpful are what dementia looks like, how it is potentially going to progress depending on type, what to do if a person with dementia goes missing (https://www.scotland.police.uk/what-s-happening/missing-persons/the-herbert-protocol/), and strategies to work around memory impairment (e.g., have memory books, have things photographed, write key things/reminders on post it notes, try not to move things around in the home)

Try to take refresher courses at least once a year to keep up to speed with new evidence and practice. Some social prescribers also wish to learn about the dementia pathway, i.e., what is the pathway from the patient seeing a GP? What happens after a diagnosis? What are the primary, secondary care and statutory services available and how can a person access them? What are the legal arrangements and practical/finance support people can arrange? If training is not mandated/offered within your job role, you may want to look for free and for pay courses and resources online
Consider national policies and dementia strategies have been released in your locality, as these provide key frameworks/information within which you can operate. E.g., https://www.alzheimers.org.uk/about-us/policy-and-influencing/national-policies
The challenge

You want to learn/experience first-hand how to support a patient living with dementia

Strategies you may want to employ
When possible, shadow someone within your team who has more experience than you
The challenge

You want to progress your career and become a specialist in dementia care

Strategies you may want to employ

Social prescribers have reported that in the current status of services, it is difficult to embed specialism in social prescribing, as social prescribers are required to support a diverse range of populations. However, if you have a special interest in dementia and want to invest in professional development, you may want to consider courses/programmes that give you accreditation (diplomas, certificates) to boost your CV and open up new horizons

Marco’s social prescribing story : Professional training

Marco’s social prescribing story : Professional training

Marco has recently started working in a PCN in London. He shares his insight into the dementia training as well as some tips to enhance professional skills to support clients with dementia.
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