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Online research survey for carers and those living with dementia

Mloughnane

Registered User
Sep 21, 2020
11
0
Hi Everyone,

As a part of my PhD dissertation, I am running a voluntary and anonymous survey to collect information from persons living with dementia and their carers regarding their experiences with the speech-language related management of dementia. Responses will help us gather information on the current clinical environment and practices with persons living with dementia as well as the barriers and facilitators they may face to the speech-language related management of dementia.

We are asking that those interested please consider completing this survey and also pass on this survey to others who fit the following criteria:
Individual living with dementia
  • Individual currently living with dementia
  • Have received formal dementia diagnosis from a GP, dementia specialist, or other licensed professional
  • Currently reside in the U.K.
Informal Carer
  • Currently provide or have previously provided care to the individual living with dementia (e.g., helping with appointments, finances, medicine, any kind of daily activities, etc.)
  • Unpaid for caregiving services
  • Have/had regular contact with person living with dementia during time of care (more than once per typical week)
  • Currently live in the U.K.

We estimate that this survey will take about 45-60 minutes to complete. It is made up of two sections, one to be completed by the person living with dementia, and one to be completed by the informal caregiver. The questions include multiple choice, multiple answer, and fill-in the blank options. All responses will remain anonymous. This study has received ethical approval from Indiana University.

Please see the link below for direct access to the survey as well as additional information:


I am happy to answer any questions you may have or discuss any of this further.

Thank you so much for your time and consideration of our research!

Megan
 

Whisperer

Registered User
Mar 27, 2017
244
0
Southern England
Dear @Mloughnane

Just a thought. Do you have any idea how many Dementia sufferers refuse to engage with the diagnosis process? Your survey excludes many potential cases from the off. Again do you appreciate how shot the diagnosis service has been during COVID-19? Again do you know how many vague diagnoses there are eg mixed Dementia, or where a carer just struggles on alone. Lovely categories, straight demarcation lines and check lists fly in the face of the Dementia experience of many sufferers and Carers. Good luck with the research, just be aware how many cases will slip through your net.
 

Mloughnane

Registered User
Sep 21, 2020
11
0
Dear @Mloughnane

Just a thought. Do you have any idea how many Dementia sufferers refuse to engage with the diagnosis process? Your survey excludes many potential cases from the off. Again do you appreciate how shot the diagnosis service has been during COVID-19? Again do you know how many vague diagnoses there are eg mixed Dementia, or where a carer just struggles on alone. Lovely categories, straight demarcation lines and check lists fly in the face of the Dementia experience of many sufferers and Carers. Good luck with the research, just be aware how many cases will slip through your net.
Thanks for your reply and interest with my project. You raise some great points, and certainly flaws that currently exist in the dementia diagnosis and awareness process. I can only speak from my background as a speech-language pathologist that we are interested in trying to improve the awareness of the resources and services that those in our field can provide. That is where the motivation for the project comes from. As such, we need those who have received a formal dementia diagnosis (of any type) to participate so that we can ask about how the process was, what services they have used and whether they have been referred to speech and language services. I wish we could include everyone, however as we are focusing on speech-language services, those who have not received a formal diagnosis would not have been referred on for further treatment associated with dementia. You make great points though, and these are certainly things that I wish were easier to address through research so that we could better improve our services for those who need them most!
 

canary

Registered User
Feb 25, 2014
14,643
0
South coast
Its not just a problems with needing a diagnosis @Mloughnane
Most people with dementia have no awareness of their own problems (anosognosia) and many of them will therefore refuse to engage with any sort of task that implies that they have dementia. Even if they are willing, the answers that they give will not be accurate.
we need those who have received a formal dementia diagnosis (of any type) to participate so that we can ask about how the process was, what services they have used and whether they have been referred to speech and language services.
I am astounded that you think that people with a diagnosis of dementia would be able to do this. Most will have absolutely no recollection of having had any sort of assessment.

My OH was recently admitted into hospital with haematuria and, because of covid, I was not allowed on the ward at all. He was kept in much longer than had been anticipated and it was only on the day that he was discharged that I found out the reason. He was asked whether he had any problems with mobility and whether he needed any help with washing or dressing. He told them firmly that he didnt have any of these problems, even though (in reality) he has a load of OT equipment including a zimmer frame, a rollator, bath board and grab rails around the house and he had carers coming in to assist him washing and dressing in the mornings! Because of this, the doctors assumed that the problems were recent, even though he has actually had problems for well over a year.

He will also pass any sort of questionnaire over to me to fill in for him and if the doctor asks him questions he will look at me for the answers. OH is not at the severe stage BTW. I personally would place him in the moderate stage and many people meeting him without knowing his background have no idea that he has dementia at all.

I am really not sure how many takers you will have for your research and also Im not sure how representative the ones that you do get will be.
 

Whisperer

Registered User
Mar 27, 2017
244
0
Southern England
Dear @canary

I was sorry to read of your recent problems. As in the past I find your comments thoughtful and informative. You more eloquently outlined the type of issue I was trying to raise.

This survey seems to be very well intentioned. I do not doubt the sincerity of the individuals behind it but they seem to lack Dementia awareness. The basic view seems to be we do Dementia but on our terms and conditions. You must get a formal diagnosis in our good time, receive a few leaflets then please move along. anosognosia be damned. It is your responsibility to get your loved one assessed, but no help or advice how this might be achieved. Issues of capacity, etc, left in the hands of Carers struggling to come to terms with what is happening and responding as best inexperienced non medically trained individuals can.

I guess an underfunded service can ration care by putting up such barriers, even if it is done unintentionally. Ironically it might help the most when speech issues are mild. Before the illness is so advanced in some cases that Carer’s can finally overcome objections and get a formal diagnosis. At that stage matters will most likely be more advanced.

It seems only when your own family has been touched by Dementia does the true nature of the illness hit home. I care for my mum, gave up full time employment to do so. I am reasonably intelligent, mild mannered, accept there are bad times to come. The one thing that causes me unease, etc, is my mum having at any time to go into hospital. Why should a carer be anxious about their loved one going into hospital. Read threads on this forum and you soon see why. It was often grim pre Covid19.
 

canary

Registered User
Feb 25, 2014
14,643
0
South coast
Hi @Whisperer
This survey seems to be very well intentioned. I do not doubt the sincerity of the individuals behind it but they seem to lack Dementia awareness.
That was very much my view too. There are probably a handful of members on this site who would be willing and able to fill in a questionnaire, but the vast majority of us are carers whose person with dementia would in no way be either willing or able to do it. Only those in the very early stages would be able to and I suspect that most of them would not have a diagnosis, because it would be so early. By the time you get a diagnosis of dementia knowing your medical history is something that you would have great difficulty with.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,229
0
High Peak
Hi @Mloughnane ! Can you tell us a little about what Speech/Language Therapy Services have to offer to people with dementia? I have heard of people being referred to 'The SALT Team' in the very late stages of dementia when people are having trouble eating/swallowing, but nothing relating to earlier stages. Perhaps you can enlighten us?

My own experience post diagnosis (my mum) was basically 'She has dementia, she will get worse, eventually she will die' and that was that. No attempts were made to help her in any way, certainly no referral to speech/language therapy. I would have thought that deteriorating language/speech was a neuro/cognitive issue rather than a speech/language therapy i.e. physical thing. But then, I'm not a doctor.

I'm not being rude (!) but how exactly could you help?
 

Up the Creek

Registered User
Sep 9, 2020
88
0
East Anglia
I have completed the questionnaire. It took about five minutes and a lot of the answers are n/a as speech therapy isn‘t one of the available services on offer to us in my area of the UK. My mum doesn‘t think she needs speech therapy ( what”s wrong with the way I speak? ) and to be honest I’m not sure what speech therapists offer as a service.

Her speech is ok but she increasing uses the wrong words and on a couple of occasions I have been left confused by a whole sentence that I couldn’t decipher. I don’t know how speech therapy can assist with this. The part about swallowing could be useful but loss of swallowing occurs at late stage and at that point would the PWD have a clue what you were trying to get them to do or is that more for the care giver to be able aid their PWD to swallow?
 

Mloughnane

Registered User
Sep 21, 2020
11
0
can i ask,what further treatment? there isnt any.
Hi, thank you for your question. Just to clarify, the types of services/treatments that I was referring to are those that can be provided by a Speech Language Therapist. Some examples of these types of things are assessing the nature of any speech or language disorders that someone may have as a result of their dementia, and how these may affect their ability to communicate. SLTs are trained to work with people with dementia as well as caregivers to improve their communication needs, advocate for them, set up personalised communication and memory tools (like communication boards, or memory books). SLTs are also able to assess and treat issues that may arise with swallowing and associated eating and drinking. Hopefully this helps to clarify a bit as what I meant by further treatments that an SLT can provide!
 

Mloughnane

Registered User
Sep 21, 2020
11
0
Hi @Mloughnane ! Can you tell us a little about what Speech/Language Therapy Services have to offer to people with dementia? I have heard of people being referred to 'The SALT Team' in the very late stages of dementia when people are having trouble eating/swallowing, but nothing relating to earlier stages. Perhaps you can enlighten us?

My own experience post diagnosis (my mum) was basically 'She has dementia, she will get worse, eventually she will die' and that was that. No attempts were made to help her in any way, certainly no referral to speech/language therapy. I would have thought that deteriorating language/speech was a neuro/cognitive issue rather than a speech/language therapy i.e. physical thing. But then, I'm not a doctor.

I'm not being rude (!) but how exactly could you help?
Hi, thank you for your question! Thank you for sharing your experience with your mum, I'm sorry to hear that there weren't more efforts made to help both her and yourself in navigating her health and condition. I am happy to share some more, one of our big goals with the type of research we are doing is to spread the awareness of the role that a Speech Language Therapist (SLT) has in working with people with dementia as well as caregivers.

At the moment, the most common way that SLTs are involved in dementia care is through swallowing (dysphagia) assessment and treatment. It's not uncommon for people with dementia to develop some difficulty with their swallowing which can affect eating and drinking, and sometimes lead to trouble breathing and choking while eating/drinking. So often SLTs are involved in working to minimize these difficulties.

Other ways that SLTs can be involved in dementia care is through assessing communication disorders which may be the result of dementia, and implementing plans to best maximize their communication ability. You are absolutely right in saying that language and speech have a neuro/cognitive basis, and SLTs do have the training and expertise to deliver cognitively based interventions that address the other cognitive symptoms often associated with communication disorders and difficulties. This is another reason that I'm trying to raise the awareness of the role that SLTs can have!

I believe there will be a more detailed and in-depth forum post made about the role that an SLT can have in dementia care, so when I see that go up I'll try and let you know so that you can get more details. Hope this helps!
 

Mloughnane

Registered User
Sep 21, 2020
11
0
Hi @Whisperer

That was very much my view too. There are probably a handful of members on this site who would be willing and able to fill in a questionnaire, but the vast majority of us are carers whose person with dementia would in no way be either willing or able to do it. Only those in the very early stages would be able to and I suspect that most of them would not have a diagnosis, because it would be so early. By the time you get a diagnosis of dementia knowing your medical history is something that you would have great difficulty with.
Hi, thank you for sharing so much of your experience, and the struggle that you had to deal with anosognosia and your OH. I am sorry to hear of the challenges and really do appreciate the feedback you had for us, as a student and researcher it is my goal to always be learning from others who have gone through similar or different experiences in providing care, so thank you again for sharing.

I wanted to hopefully clarify one point that you did bring up. We are looking for those persons with dementia and their carers to both take part in the study so that they may work together while filling out the survey. We encourage carers to help with the questions for the person with dementia if both people find it appropriate and useful. This may not always be the case, and that's fine, everyone's situations may be different so we want to allow for that variability.

Thank you!
 
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Mloughnane

Registered User
Sep 21, 2020
11
0
I have completed the questionnaire. It took about five minutes and a lot of the answers are n/a as speech therapy isn‘t one of the available services on offer to us in my area of the UK. My mum doesn‘t think she needs speech therapy ( what”s wrong with the way I speak? ) and to be honest I’m not sure what speech therapists offer as a service.

Her speech is ok but she increasing uses the wrong words and on a couple of occasions I have been left confused by a whole sentence that I couldn’t decipher. I don’t know how speech therapy can assist with this. The part about swallowing could be useful but loss of swallowing occurs at late stage and at that point would the PWD have a clue what you were trying to get them to do or is that more for the care giver to be able aid their PWD to swallow?
Hi, thank you for participating in our study! I'm glad it didn't take too much of your time, but we really appreciate it.

One of our goals along with this project is to raise the awareness of how Speech Language Therapists (SLTs) can be involved in dementia care, so your questions are spot on with this. You are absolutely right about how swallowing can be affected in dementia, and this is the most common way that SLTs are involved in dementia care. Sometimes issues with swallowing and thus eating and drinking can happen in earlier stages of dementia, but you are right that they do often occur in later stages. SLTs are involved in the assessment and management of these swallowing treatments. This type of work would be separate from the speech or language services they could provide. I have posted a bit about what role SLTs have for speech and language in dementia in some responses on this thread, if you'd like to see those. Also, I believe there will be a more detailed post/thread made about the role that an SLT has, so I'll try and flag that down when it is posted.

Hope this helps! Thanks again for your participation and questions!
 

nitram

Registered User
Apr 6, 2011
21,726
0
North Manchester
All my experience with SALT was with swallowing and progression through soft and pureed diet to fortified drinks.
Speech problem was simply inability to verbalise with an occasional perfectly spoken standard reply eg 'I'm very well. thank you
'
 
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Alzheimer's Society

Volunteer Moderator
Apr 6, 2009
2,344
0
www.alzheimers.org.uk
Hi everyone,

Thanks for sharing your feedback and thoughts. @Mloughnane has kindly provided us with some more information, which we hope will be helpful to you all and answer some of the questions that have come up :)

---

What the role of Speech Language Therapists (SLTs) is in dementia assessment and management:

While the diagnosis of dementia is made by a medical team involving a general practitioner, neurologist, psychiatrist, or dementia specialist, among others, the role of the SLT is to assess and identify the cognitive-communicative symptoms associated with dementia, implement their treatment, and provide education, advocacy and research with people with dementia. They may work in a variety of settings such as specialist memory services, hospital wards, community services, care hones, and community mental health teams.

In terms of assessment, an SLT is meant to identify the needs of someone with dementia to inform ways of treatment. These can include:

· The nature and severity of the language/speech disorder and its impact on communication.

· The profile of skills and difficulties with communication and the resulting challenges and risks for the individual with dementia and their carers in everyday life.

· The contribution that unmet communication needs make to behaviour that challenges.

· The psychological and social impact of the communication difficulty on the person with dementia and their carers.

· The communication network (including, people and places) to maximise communication opportunities.

· The capacity for decision making in those who are experiencing significant language disorder including strategies to facilitate this.

· The likely progression of the language disorder to enable health and social care interventions to be delivered in a timely and effective manner

In terms of treatment/interventions for communication based concerns, SLTs can offer a variety of services for people with dementia as well as their carers. Some examples include:

· Direct intervention with the person with dementia to provide specific programmes to maintain and maximise communication function; for example, personalised communication and memory strategies (including communication passports and life story work).

· Work with formal and informal carers to implement personalised communication strategies.

· Provide advice on changes necessary to reduce the increased risks identified for the person with communication impairment, so they are able to function as safely and independently as possible within their community.

· Facilitation of the use of communication strategies in all environments, within the home and in the wider community.

· Help for the person and their family carers to manage stress resulting from communication difficulties.

· Group intervention to maximise retained communication skills and provide a supportive environment for socialisation; for example, Sonas groups, cognitive stimulation therapy, and reminiscence.

· Advocate for an individual with complex communication needs arising from their dementia

For swallowing and management of eating and drinking, and SLT can for example:

· Identifying the nature and severity of any eating, drinking and swallowing disorder and the impact this has on enjoyment of food and mealtimes.

· Assessing the risk of aspiration and choking.

· Making recommendations for the management of swallowing difficulties.

· Advising, supporting and training carers in effective ways to promote safe swallowing, reduce risk of aspiration and enable nutrition and hydration needs to be met.

· Enabling family carers to have full understanding and involvement in the decision making process at end of life and offer support as required.

Here is a list of some of the sources and places to look for additional information on the topic:
 

Lawson58

Registered User
Aug 1, 2014
2,277
0
Victoria, Australia
My husband is a high functioning person, diagnosed several years ago with Alzheimer's. Even now, he doesn't acknowledge that he has the disease and I guess that this is the norm for many people with dementia.

He plays bridge several days a week but when it comes to filling in forms prior to medical treatment etc, he dumps them on me to complete. Apart from often being a little complicated, he doesn't want to have to write the word Alzheimer's into anything related to his health. It's OK for me to do it so long as he doesn't have to look at it.

This denial is all about survival and self protection from dealing with the issues that confront them.
 

Countryboy

Registered User
Mar 17, 2005
1,523
0
Cornwall
Hi I been a member on Talking Point since March 2005 and for several years was telling everyone
I was diagnosed with Alzheimer’s in November 1999 aged 57 :confused: sorry actually it was July 1999 just after my 56th birthday ;) I was never diagnosed by a GP it was at the Hospital with a Consultant in Old Age Psychiatry albeit I didn’t think 56 was old.:D both my parents had dementias and because I was registered with a different GP practice that information was never shared wiyh my GP or Consultants but like many others I definitely wasn’t like my parents :rolleyes: so therefore I struggled to believe or accept my diagnoses so in March 2003 I had a PET brain scan and a SPECT scan April 2004 hence FTD the scans showed damage to frontal-temporal-lobes I continued to carry on at work until I retired aged 65 and wanted to carry on living as usual but unfortunately once bureaucrats get involved it started to become a nightmare :mad::mad: always having to argue and fight especially with DVLA but I never backed down and fought them tooth and nail obviously after almost 22 years and other medical conditions I’m not so lively now :D:cool: but its nothing to do with FTD or Dementias its growing Older I’m still positive person in my thinking and actions and above ground:):)