Connecting people, connecting support. Ask a speech & Language Therapist

image1

It’s Primary Progressive Aphasia,” the neurologist said. “I’m afraid there’s nothing we can do.”

I worked with someone recently who was given this devastating information. For several months she’d had numerous tests, hospital admissions, scans and appointments while her increasingly concerned family watched her symptoms change and develop.

But this was the final outcome: “Nothing we can do.”

Really?

Firstly, what is Primary Progressive Aphasia?

The family I was working with had never heard of it.  Have you?

I work as a speech and language therapist with a special interest in dementia and it’s my business to know about it.   But that doesn’t necessarily mean I’ll have seen it before.

According to Alzheimer Scotland it even has other names –‘ Progressive Non Fluent Aphasia (PNFA), for example, is  a condition that affects a person’s ability to use language. It forms part of a group of related conditions referred to as Frontotemporal dementia (FTD for short)’.

This constantly changing terminology can be confusing and often makes accessing information more difficult.

For that family that day in the doctor’s office, it only added to their feeling of uncertainty and bewilderment. And a simple leaflet from the surgery was never going to cover all the areas of anxiety.

Alzheimer Scotland also says: “Currently, there is no cure or specific treatment for PNFA. There may be ways to treat some of the symptoms but these will depend on the individual’s needs.”

Yet there is a therapeutic army out there who could potentially help with some of the symptoms and work with individual’s needs.

This army comprises allied health professionals (AHPs) who are trained to deal with a wide array of difficulties.

You’ll have heard of all of them but may not have considered them as  players on the same team – occupational therapists, physiotherapists, radiographers, podiatrists, art or music therapists, radiographers, dieticians, orthoptists, orthotists, paramedics and speech and language therapists.

reportA recent AHP  policy document called’ Connecting People, Connecting Support’ outlines how this therapeutic army can improve support for people with dementia, their families and their carers,  to enable them to have positive, fulfilling and independent lives for as long as possible.

When dementia becomes every allied health professional’s business and the workforce is skilled and knowledgeable in best dementia care, it can be transformative.

The woman with Primary Progressive Aphasia went home with the leaflet she couldn’t understand and wondered about her future.

I had an appointment booked with her and visited her at home two days later.  Using simplified language with visual cues and gesture, she was able to discuss her confusion and fear.

We made regular plans for appointments and set goals together.  Each week, we added to a communication book about her life with key words and phrases she could turn to if she felt ‘stuck.’  She looked out old photographs and we talked about family events and happy memories.

She agreed to write down three things she did each day so she could use the speech she had left to chat with her husband each evening.  We plan to develop this into a video diary to record her diminishing voice.

She was losing weight so I referred her to the dietician.  I shared the most successful ways to communicate with the dietician prior to her visit.  This resulted in a comprehensive and detailed assessment, together with a diet plan to encourage her eating, and it was quickly implemented.  She may require the skills of the occupational therapist in future to enable her to manage in the kitchen.   Perhaps the physiotherapist will be asked to help with mobility or the podiatrist can offer appropriate footcare.

We researched PPA together and she began to understand the condition.   She told me she was feeling more positive and hopeful.  She started to live well again with her diagnosis.

Nothing we can do?

The AHP army is mobilised and ready for action, integrating the ambitions of Connecting People, Connecting Support to our everyday practice

image3

References:

Alzheimer Scotland: Progressive Non-Fluent Aphasia Information Leaflet https://www.alzscot.org/assets/0002/…/Progressive_Non_Fluent_Aphasia

Alzheimer Scotland (2017) Connecting People Connecting Support
https://www.alzscot.org/ahp

jenny_keirJenny Keir
Speech & Language Therapist
NHS Tayside

 

Advertisements

Living with Dementia … How occupational therapy CAN help.

OT_Can_help

If you are living with dementia or know someone who has just been diagnosed with dementia you may find these tops tips helpful. Occupational therapists have designed these 3 top tips to help you manage day to day tasks, to stay active and keep connected with your local community. But we are we are really interested to know:

  • What do you like about our top tips?
  • What would have made them even better?
  • What top tips did we miss out?

Staying active in everyday life

  • You have a future – hopes and dreams can still be realised.
  • Keep doing what you enjoy and what’s important to you.
  • Keep your routine going. Routines provide structure and familiarity.
  • Decide what you need help with and what you don’t.
  • Try something new. Use technology, like mobile phone apps, to stay independent.

Taking care of yourself

  • Exercise, get out and about.
  • Eat regularly and have a balanced diet.
  • Stay connected to family and friends.
  • Keep talking. Let people know what helps you with communication.
  • Take time to relax. Be aware of how you feel, it’s OK to have time to yourself.
  • Try to do one thing at a time. Don’t put yourself under pressure

What you can do at home

  • Use reminders for information, dates and appointments. Everyday technology can help.
  • Declutter so the objects you use every day are easier to find.
  • Use colour contrast to make objects stand out.
  • Remove trip hazards, like rugs.
  • Make sure rooms are clearly lit. Consider night lights.

Support from an occupational therapist

An occupational therapist can work with you to overcome the barriers that prevent you from doing what matters to you. Occupational therapy can help you to:

  • Use your strengths and abilities to stay active.
  • Adopt strategies and techniques to continue with daily occupations (activities)
  • Make changes to make life easier and to live safely in your home
  • Access your community, getting to the shops and local facilities.
  • Continue with valued roles, such as working or caring for others.
  • Advise family and friends on how to support you to live well with dementia.

Arranging to see an occupational therapist

You can talk to your GP or a health and social care professional about seeing an occupational therapist. There are occupational therapists working in specialist dementia services and in broader services like rehabilitation and enablement teams. You can also call the help and advice line of your local council to request advice and an assessment. Details of occupational therapy services are usually found under Social Care and Health on council websites.

On reflection

We are however really interested to know:

  • What do you like about our top tips?
  • What would have made them even better?
  • What top tips did we miss out?

on_relection

carrie_milligan
Today’s author of this blog was Carrie Milligan, Chair of the Scottish Occupational Therapy Dementia Working Group.  These top tips were designed by the Scottish Occupational Therapy Dementia Working Group. This work links with our ‘with Occupational therapy you CAN’ postcards. If you are an occupational therapist with an interest in dementia and would be interested in being involved in future developments, please get in touch.

Please email Elaine at ehunter@alzscot.org if you would like a copy the new leaflet

Connecting people, connecting support

Making dementia everyone’s business : a radiographers perspective

connecting_people_blog

I’ve had a keen interest in improving the care of people living with dementia who visit our imaging departments since my grandfather was diagnosed over 20 years ago.

At this time, little was known of the disease in comparison with today and as a consequence patient centred care was not the norm.

Today one million people in the UK will have a diagnosis of dementia by 2025 and this will increase to two million by 2050.

Over the last three years I have been a part of an Allied Health Professions (AHP) dementia expert group. This group was charged with producing a policy document outlining the contribution and impact that AHP’s can have to the quality of life and care given to people living with dementia and their carers in Scotland.

The document titled Connecting People, Connecting Support, has now been published and can be found here, along with an overview of the journey to create the document.

I wanted to write about the experience of being involved with this group as it has highlighted what can be gained from collaborative working.

This document was commissioned by the Scottish Government in partnership with Alzheimer’s Scotland. This meant liaising directly with people living with dementia, hearing directly from them about what would enhance their treatment and ultimately their life.

The group also learned about the various roles of AHPs both within the acute and primary care setting and the part that we all play in the patient journey.

This was a great opportunity to raise the profile of our profession to a wider audience through social media, blogs and literature, all of which can be found on the Alzheimer’s Scotland website.

As a result of this collaborative working we were able to ensure that the document could be aimed at a wide audience, from other healthcare workers to people living with dementia and their carers.

‘Connecting People, Connecting Support’ is mainly demonstrating the work of the four AHP groups, physiotherapy, occupational therapy, dieticians and podiatry, that can have the biggest impact on patient’s living with dementia.

Regardless of the stage that an individual is at on their dementia journey, input from these professions can drastically improve their outcome and ensure that care is patient centred.

The document has several key ambitions. The most pertinent for radiographers working in both therapeutic and diagnostic departments is around the standard of education that should be in place for the multidisciplinary teams working with our departments.

The aim is that all members of the healthcare team will be educated to a skilled level in dementia care.

The terminology used to describe this varies in each of the four countries, however, all have the same aim of ensuring that the framework structures for dementia education are in place.

By guaranteeing fundamental skills and advancing the leadership in this area, we can ensure that care is patient centred. Higher education institutions are integral to this training goal.

Since 2014 all Scottish universities ensure student radiographers are taught dementia care modules to the required level, equipping them with the skills to work with patients living with dementia who visit our departments.

The Society and College of Radiographers have also been instrumental in producing guidelines for radiographers caring for those living with dementia who visit our departments.

These can be found on the Society and College of Radiographers website along with links to other key publications here.

The message I would like anyone reading this article to take away is that by making ‘dementia everyone’s business’, radiographers have scope to improve the care given within our departments.

Each one of us can ensure that we complete the education required and with the help of dementia champions we can continue to look at ways in which we can ensure that the care we offered is tailored to meet our patients varied needs.

Author: Caroline Handley, Diagnostic Radiographer, NHS Greater Glasgow & Clyde

This article was reproduced by permission of Caroline and the Society and College of Radiographers.  A copy of this article published on the 14th November can be found here:

This article was reproduced by permission of Caroline and the Society and College of Radiographers.  A copy of this article published on the 14th November can be found here:

https://www.sor.org/news/making-dementia-everyone-s-business

caroline_handley
Author: Caroline Handley, Diagnostic Radiographer, NHS Greater Glasgow & Clyde

This article was reproduced by permission of Caroline and the Society and College of Radiographers. A copy of this article published on the 14th November can be found here:
https://www.sor.org/news/making-dementia-everyone-s-business

Previous blogs by Caroline

11th August 2016 Allied Health Professionals Maximising Physical Wellbeing  WHAT IS A RADIOGRAPHER? https://letstalkaboutdementia.wordpress.com/2016/08/11/allied-health-professionals-maximising-physical-wellbeing-3

1st June 2017 Maximising Physical Wellbeing: Radiographers making dementia our business! https://letstalkaboutdementia.wordpress.com/2017/06/01/maximising-physical-wellbeing-radiographers-making-dementia-our-business/#comments

 

Connecting people, connecting support

SPOTLIGHT: Allied health professionals enhancing daily living

image1

Background

Connecting People, Connecting Support is about how allied health professionals (AHPs) in Scotland can support people with dementia, their families and carers to live positive, fulfilling and independent lives for as long as possible. The document presents an evidence-informed case to support an approach to practice for ALL AHPs in Scotland when working with people living with dementia – what we call the AHP approach. The fundamental understanding driving the AHP approach is that people living with dementia can benefit from AHP-led interventions.   In this week’s blog we are sharing the AHP contribution to enhancing daily living.

image2

Enhancing Daily Living  teaapot

What do we mean by enhancing daily living ?

The ability to wash and dress, prepare food, use transport, engage in everyday life, do things around the house, have fun, work, study, and take part in family and leisure activities is important for overall health well-being and integral to good-quality dementia care.

People with dementia can be supported to continue to engage in the life of their community, whether that be a city, town, village, neighbourhood or care home, extracting value from their everyday participation in activities and enhancing their wellbeing. A range of evidence-informed, homebased AHP rehabilitation interventions exists to support people in their activities of daily living, with developing evidence on the role of vocational rehabilitation for those of working age.

key_facts

Why is enhancing daily living important : 5 things you need to know 

  1. There is increasing evidence about the importance of occupation and activity for people with dementia with research evaluations acknowledging that interventions individually tailored to meet people’s interests, preferences and abilities are more effective.
  2. Recreational activities provide an opportunity for people with dementia to engage in meaningful activity and meet their needs for communication, self-esteem, sense of identity and relaxation, and help to promote physical wellbeing.
  3. People with early onset dementia who are in employment can continue working with the correct support
  4. There is also a need to support family members who may wish to continue to work while in the caring role.
  5. Evidence is emerging of the positive impacts of adapting complex AHP interventions in home and community settings (particularly by occupational therapists and physiotherapists) in maintaining people’s function in the community, supporting families and carers, and increasing feelings of competence and self-efficacy, all of which can result in improved quality of life for people living with dementia 

3 ways allied health professionals CAN enhance daily living ?

  1. Valuing everyday activities

Therapeutic activities are delivered by a range of health and social care staff, third sector practitioners and volunteers with appropriate training and supervision, which is vital for the benefits of engagement in activities to be realised. AHPs, particularly occupational therapists, can play an important and collaborative role as experts in understanding the intrinsic relationship between person, environment and occupation, using assessment tools and models of practice to identify personalised meaningful activities. They can break down activities into fundamental components, develop compensatory techniques, adjust activities to individual preferences and strengths, and offer activity strategies to encourage maximum engagement. AHPs support people to remain engaged in everyday activities through a risk-enablement approach that enhances the person’s ability to retain identity and a sense of purpose. AHPs work directly with health and social care practitioners, including dementia link workers and those in the third and independent sectors, providing creative and innovative opportunities for skills-sharing, skills development and training.

2. Enhancing vocational and educational opportunities

AHPs play a central role in helping people to remain and/or return to work and manage their health and wellbeing, with many examples of vocational rehabilitation initiatives led by AHPs in partnership with job centres or employment agencies creating employment pathways. They assess functional abilities in clinical settings and workplaces to provide the most appropriate solutions to deliver long-term benefits, with many having completed extended training courses specialising in vocational rehabilitation. AHPs, particularly occupational therapists and physiotherapists, can help keep people at work by advising employees on their fitness for work and successful return, and offering recommendations to employers on modifications and reasonable adjustments to help the person with dementia remain in work (Allied Health Professions Federation, 2012). Speech and language therapists can offer advice to employees and employers on communication modifications and workplace support strategies. Postemployment support will be integral to AHPs’ roles, allowing people to consider alternative work opportunities if appropriate.

 3. AHP-led targeted rehabilitation interventions

AHPs are delivering successful AHP-led targeted interventions in people’s homes and in the community that focus on the symptoms of dementia. The starting point for AHP-led interventions is a dynamic and specialist skilled assessment. From individual assessments, often in the person’s own environmental context, personalised and tailored personal outcome plans are developed to best meet the person’s needs, aspiration and wishes, focusing on assets and strengths. The use of personalised and tailored outcome plans align with key Scottish Government policy areas, including the national post-diagnostic commitment. The rehabilitation strategies will incorporate modifying environments, simplifying tasks, establishing routines and repetitive practising of tasks, with a strong emphasis on quality of life.

teaandcake
Thank you Adrienne for allowing us to share your photograph

On reflection
Thank you for taking the time to read this blog and we would like to know

  • As an AHP, how do you currently support people living with dementia in everyday activities to enhance wellbeing?
  • As person living with dementia, what support would you like to receive from allied health professionals to support you in your everyday activities?
  • As family carer, what support would you like to receive from allied health professionals to support you in your everyday activities?

We look forward to hearing from you

References

There are 33 references supporting this text which you will find in the original report and viewed here  https://www.alzscot.org/assets/0002/7356/AHP_Report_2017_WEB.pdf with all the evidence informing the policy available at www.alzscot.org/ahp

 

Connecting People, Connecting Support- How can we realise the ambitions?

pic1

The Royal College of Occupational Therapists was keen to endorse this Allied Health Professional’s report from Alzheimer Scotland as it lays out the allied health professions offer to people living with dementia.

We are, however, acutely aware that many people cannot routinely access advice and expertise when they need it but have to reach a crisis point before getting help. That is why we welcome the ambitions within the report

  1. Enhanced access to AHP-led information, supported self-management and targeted interventions
  2. Partnership and integration, multiagency pathways and integrated models of care
  3. A commitment to clinical leadership for transforming AHP practice
  4. Innovation, improvement and research. 

How do we realise the four ambitions?

These ambitions sit well with recent work at the College. Our latest report Living not existing, Putting prevention at the heart of care for older people calls for occupational therapists to engage more directly with GPs, work with community providers to provide training, coaching and expertise to ensure all carers and staff take an enabling approach, and extend the range of their practice to giving advice, developing resources and working with communities. The report highlights teams that have already created partnerships across services to deliver person centred support.

Using a universal, targeted and specialist service model could help with the first step to realising a transformation in practice.  By considering the local population they serve, occupational therapists should ask:

pic2How do we share our expertise across the whole community of people living with dementia? How do we work in a more targeted way with specific groups of people, such as people with dementia living in care homes? How do people with dementia access individualised, specialist support?

Working with Alzheimer Scotland our working group of occupational therapists have started to address the profession’s universal offer.  At first a postcard flagging up what occupational therapy can offer and now our leaflet with top tips for staying active, taking care of ourselves and making the home dementia friendly.

The College has also developed a Career Development Framework  with a pillar on leadership, supporting occupational therapists to recognise their leadership skills and develop them fully.

 

Finally after reviewing  the local community’s  needs against current service provision we encourage occupational therapists to consider potential partners to support them to create a vision and to realise that vision. Occupational therapists are a limited resource and we need to think how best to share our expertise. Can we redesign our services so that we are addressing the three levels of need:

1.Universal: sharing information  and expertise to promote awareness and knowledge,

2. Targeted: working with groups of people to teach strategies to support people with dementia and their families to continue to live active lives,

3. Specialist: providing an individualised service for people with complex needs such as multiple co-morbidities, end of life , safeguarding , acute distress and agitation, family breakdown and homelessness?

Occupational therapists can come to one of our regional roadshows to develop ideas on service redesign. In the meantime, we hope Connecting People, Connecting Support  prompts occupational therapists to reflect and create some space to think afresh about what they offer. Occupational therapy week seems a good time to celebrate the best of what we do but also an opportunity  to think what next?

pic3

pic4
Karin Orman, Royal College of Occupational Therapists.
Karin.orman@rcot.co.uk

For copies of the Alzheimer Scotland and RCOT top tips  leaflet contact:
Ashleigh.watkins@rcot.co.uk

 

 

 

 

 

Connecting people, connecting support

SPOTLIGHT:
Allied health professionals supporting families and carers as equal partners

speech

Background
Connecting People, Connecting Support is about how allied health professionals (AHPs) in Scotland can support people with dementia, their families and carers to live positive, fulfilling and independent lives for as long as possible. The document presents an evidence-informed case to support an approach to practice for AHPs working with people living with dementia – what we call the AHP approach – with the intention of promoting local integration and implementation. The full report can be viewed here  https://www.alzscot.org/assets/0002/7356/AHP_Report_2017_WEB.pdf with all the evidence informing the policy available at www.alzscot.org/ahp

image1

What is the AHP approach in dementia care and treatment?

The AHP approach aims to maximise the AHP contribution to high-quality, cost-effective dementia services that are tailored to the needs of individuals, reflect the best available evidence and are delivered by a skilled AHP workforce. The fundamental understanding driving the approach is that people living with dementia can benefit from AHP-led interventions.

While AHP specialists in dementia are relatively few, many more AHPs will meet and work with people living with dementia as part of their roles: the approach therefore aims to bring meaning and purpose to the work of all AHPs in relation to dementia, identifying the contribution AHPs can make to both universal and targeted AHP-led interventions.

To achieve this, the AHP biopsychosocial approach to understanding the experience of dementia and delivering AHP-led interventions – what we’re calling the AHP approach – focuses on five key elements.  In this week’s blog we putting a spotlight on the AHP contribution to supporting families and carers as equal partners

 image2

The AHP approach

 

Supporting Families and carers as equal partnersspeech

What
This is about families and carers being fully involved in the AHP approach. They are equal partners in areas such as education and skills training as potential co-therapists, and are potential recipients of AHP-led interventions to meet their own health and wellbeing needs (developing coping strategies and accessing support to maintain their own hobbies and interests, for example).

Why
People with dementia living in the community are frequently supported by informal carers, including spouses/partners, other family members, friends and neighbours. Family carers of people with dementia have higher rates of depression and anxiety, and experience high levels of stress and distress (Petriwskyj et al., 2015). The process of taking on a caregiving role is often experienced as an unexpected and unplanned event and transition; there is a growing realisation of the need to ensure family carers have access to services that can support them (Ógáin & Mountain, 2015).

Family involvement is often the key to the success of home-based interventions and many AHP-led interventions (Pentland, 2015): individual family members are experts about the person and his or her care needs.

Family carers have the right to have their own needs met, to maintain quality of life, to have fun, and to have their hopes and dreams fulfilled. This can be supported through assessing carers’ needs, developing care plans, and promoting the social support of being connected to their local community.

Families’ and carers’ expertise and knowledge and the quality of the care they provide for the person must be acknowledged. The adverse impacts of caring can be reduced with appropriate and timely AHP support to prevent crises. It is everyone’s job to identify and support carers, and their physical and emotional needs should be considered independently of the person with dementia.

How

Families and carers as equal partners in care

AHPs develop effective strategies and involve family members in AHP-led interventions, identifying methods of working with families and carers so that the voice of the person with dementia is heard and his or her needs are balanced with those of carers in ways that do not compromise the caring relationship. Family members can provide essential knowledge about the person with dementia to inform the therapeutic process and provide feedback about the degree of therapeutic success. Their engagement is crucial in providing continuity of AHP-led therapeutic strategies within daily routines at home and in the community. Partnership-working between AHPs and families also enables skills and routines to be maintained during episodes of general hospital admission and at discharge.

Maximising families’ and carers’ physical health and psychological wellbeing

AHPs support family members and carers to maintain their existing relationships, hobbies, interests, vocational roles and informal support networks. This helps to maintain resilience, prevent social isolation and protect their physical and psychological wellbeing. Support is offered in a range of formats and topics, including personalised support on communication strategies, advice on stress management, access to up-to-date information and advice, appropriate training on equipment and access to adaptation services. Evidence suggests that positive feedback from professionals has an enormous effect in keeping people feeling positive about their caring role (Dewar & MacBride, 2015).

Joint working with health and social care practitioners

AHPs have always worked with other health and social care practitioners to support people’s rehabilitation. This continues to be a priority for people living with dementia. Assessment, interventions and family-carer support are more effective when the health and social care team works in collaborative, inter-professional ways with people living with dementia. The approach is therefore designed to be implemented within multidisciplinary, multi-professional teams working collaboratively across agency lines. AHPs work directly with health and social care practitioners, including dementia link workers, dementia advisors, and people from the third and independent sectors, providing creative and innovative opportunities for skills-sharing, skills development, joint working and training. AHPs will signpost people living with dementia to other services, such as care and repair, leisure, established community groups and voluntary services, to enhance independent living. There is also a significant opportunity for the AHP contribution to be incorporated and co-ordinated within the care home sector.

On reflection

Thank you for taking the time to read this blog and we would like to know

  • As an AHP, how do you currently support families and carers of people living with dementia?
  • As families and carers, what support would you like to receive from allied health professionals?

We look forward to hearing from you

Thank you Beth & Nancy for allowing us to share this great photograph

image3

References

Alzheimer Disease International (2011) World Alzheimer Report 2011. The Benefit of Early

Diagnosis and Intervention. Alzheimer Disease International, London http://www.alz.co.uk/research/world-report-2011

Alzheimer Scotland (2012) Delivering Integrated Dementia Care: the 8 Pillars Model of Community Support. Alzheimer Scotland, Edinburgh http://www.alzscot.org/assets/0000/4613/FULL_

REPORT_8_Pillars_Model_of_Community_Support.pdf

Dewar B, MacBride T (2015) Experiences of Caring for a Person With Dementia: the Perspective of the Unpaid Carer. Focus on Dementia, University of the West of Scotland

www.qihub.scot.nhs.uk/media/909969/8%20pillars%20carers%20report%20december%202015%20final%20for%20publication%2015%20december%202015.pdf

Ógáin EN, Mountain K (2015) Remember Me:Improving Quality of Life for People with Dementia and their Carers through Impact Investment. Nesta, London www.nesta.org.uk/sites/default/files/remember_ me.pdf

Pentland D (2015) A Scoping Review of AHP Interventions for People Living with Dementia, their Families, Partners and Carers. Prepared for Alzheimer Scotland. Division of Occupational Therapy and Arts Therapies, Queen Margaret University, Edinburgh

http://www.alzscot.org/assets/0002/1495/A_scoping_review_of_AHP_interventions_for_people_living_with_dementia__their_families__partners_and_carers_2015.pdf

Petriwskyj A, Parker D, O’Dwyer S, Moyle W, Nucifora N (2015) Interventions to build resilience in family carers of people living with dementia: a systematic review protocol. Joanna Briggs

Institute Database of Systematic Reviews and Implementation Reports. 13 (7), pp. 44–61.

Dementia and Mealtimes

The views of people with dementia about mealtimes

Blog1

One of the issues which has emerged from  previous Talking Mats and dementia projects is that many people with dementia experience difficulties with mealtimes and that it can affect people at any stage of dementia.

Mealtimes involve two of our most fundamental human needs, the basic physiological requirements for food and drink and interpersonal involvement. Mealtimes are particularly important for people with dementia as they may develop difficulties both with eating as a source of nourishment and with the social aspects of mealtimes.

In 2015 Joan Murphy and James McKillop carried out a project, funded by the Miss EC Hendry Charitable Trust, to gather information from the first-hand experience of people with dementia about their views about mealtimes. We ran three focus groups and used the Talking Mats Eating and Drinking Resource to allow participants to reflect, express and share their views.

Findings: 
The people who took part in this study felt that there were significant changes in their eating and drinking since their diagnosis of dementia. For some, their experience of mealtimes had changed and several said that they now skip breakfast and sometimes lunch. For some this seemed to be related to forgetting to eat and drink, for others it related to changes in taste whereas for others these meals seemed to be simply less important. Forgetting to eat was particularly noted by the participants with dementia and confirmed by their spouses.

The social aspect of eating and drinking also changed for many of the participants and, given the importance of social engagement for quality of life it is important to be aware of the effects of changes in eating and drinking on mealtime dynamics. For some it may be that they are now less interested in the social aspect of eating with others at home. Others found it hard to eat out because of distractions and lack of familiarity while some felt embarrassed about eating out in front of strangers. Others still really enjoyed going out for meals but added that they preferred to go somewhere well-known to them. The shared mealtime may be a particularly crucial opportunity for social engagement as it plays a central role in our daily lives. Social relationships are central for not only enhancing quality of life, but also for preventing ill health and decreasing mortality (Maher, 2013).

Almost all the participants talked about how their taste had changed both for food and drink which in turn affected their appetite. Some families had overcome the problem of lack of taste by going for more strongly flavoured food. When asked specifically about drinking, thirst was noted as a significant change since diagnosis
Their feelings about the texture of food did not appear to have changed significantly and was simply a matter of preference.

Three additional health issues which the participants felt were connected with eating and drinking were poorer energy levels than before their diagnosis, reduction in ability to concentrate and changes in sleep patterns.

For a copy of the full report “I don’t enjoy food like I used to ”The views of people with dementia about mealtimes” please click here http://www.talkingmats.com/wp-content/uploads/2016/01/Dementia-and-Mealtimes-final-report-2015.pdf

On reflection:

If you have other thoughts about how mealtimes are altered when living with dementia please let us know and we can collect comments for another blog to share with others. Email – info@talkingmats.com

Our author for today:
Joan Murphy
Co-director, Talking Mats
@talkingmats

I am a Research Speech and Language Therapist and Co-director of Talking Mats Ltd which is a not-for profit Social Enterprise based in Stirling, Scotland. I worked with people with communication difficulties with the NHS for many years and have also carried out research at Stirling University. I have led a number of research projects and have a wide portfolio of publications. Together with my colleagues, I have developed Talking Mats® into a well-respected communication framework, which is used worldwide with people of all ages, abilities and backgrounds.

For further information about Talking Mats see our website: www.talkingmats.com

Other useful information and resources

Kellet, R. E. (2012). Communication and Mealtimes Toolkit: Helping people with dementia to eat, drink and communicate. Retrieved from

http://www.nhsdg.scot.nhs.uk/Departments_and_Services/Speech_and_Language_Therapy/Adult_SLT/Documents/Communication___Mealtimes_Toolkit_for_Dementia_2013.pdf

Let’s talk about dementia: speech and language therapy in dementia. (2015). Retrieved from Let’s talk about dementia: https://letstalkaboutdementia.wordpress.com/2015/03/05/speech-language-therapy-in-dementia-dispelling-some-myths/

Thank you to Joan and colleagues for allowing us to share a previous blog post, originally posted at http://www.talkingmats.com/dementia-and-mealtimes/