Survey About Being Diagnosed with Dementia in Wales

Survey on your experiences of being diagnosed with dementia

Alzheimer’s Society would like to know more about your experience of receiving a diagnosis of dementia and the support you received immediately after diagnosis. This survey will be used to help us campaign for change. Results from this survey will be published in a report later this year.

There are 22 questions in a tick box format. It is fine to ask someone to help you fill in this survey. If you don’t want to answer a question, just leave it blank. All responses to the survey will be treated anonymously.

Please return your responses by Monday 15 June 2015. Freepost RTEU-SAYH-URTH Alice Southern, Alzheimer’s Society Unit 16 Columbus Walk Brigatine Place Cardiff CF10 4BY

If you would like more information about this survey please contact: Alice Southern at the above address or T: 029 2047 5580 E: [email protected]

Thank you very much for taking the time to fill out this survey.

Are you filling out this form? On my own With a family member, husband/wife or friend With a support worker or volunteer Someone is completing this survey on my behalf Other Section one: Before your diagnosis

This section asks about your thoughts and feelings before you received your diagnosis.

Q1 In which year did you first experience the symptoms of dementia? (for example, 2009)

Q2 Did you wait more than a year after first experiencing symptoms before discussing them with your GP?

Don’t know

Q3 Before you went to visit your GP, did you think that they would take your concerns seriously?

Don’t know

Q4 Before you received your diagnosis, did you think that your symptoms were a normal part of getting older? Yes

Don’t know Q5 Who was the first professional who you discussed your symptoms with?

Hospital staff

Care home staff

Social worker

Someone who works for a charity

Don’t know

Other, please describe

Q6 When you discussed your symptoms with your GP, did they refer you to a specialist straight away?

Don’t know

If you answered no, please answer question 7.

If you answered yes, please go to question 8.

Q7 If the doctor didn’t refer you for further investigations straight away, why was this?

The doctor thought I had a different condition (e.g., depression)

The doctor gave me the diagnosis at that visit

The doctor wanted to wait to see how my symptoms developed

The doctor did not think that my symptoms needed further investigation

Other, please describe

Section two: Your diagnosis

This section asks about your experiences on the day you were diagnosed.

Q8 In which year did you receive your diagnosis of dementia? (for example, 2009)

Q9 Who gave you your diagnosis?

The memory clinic

The community mental health team

Hospital staff, during an inpatient stay

Other, please specify

Q10 Was your diagnosis given to you in a sensitive way?

Don’t know

Q11 When you were diagnosed, were you given enough information about dementia?

Don't know Q12 When you were diagnosed, were you given enough information about services in your area?

Don't know Q13 When you were diagnosed, were you given a named person to contact for advice and support?

Don't know

Section three: After your diagnosis

This section asks about your experiences after diagnosis – how you felt and the support you were offered.

Q14 Do you feel that receiving your diagnosis has helped you to live better with dementia?

Don't know

Q15 In the 12 months after diagnosis, which of the following forms of support did you receive?

I was prescribed medication

I was referred for counselling I was given a named support worker

A domiciliary care package was set up for me

I received support from an occupational therapist

I attended a social or support group

I was matched with a befriender

Nothing

Other, please give details on the next page

If you received any other forms of support, please give details here.

Q16 In the first six months after your diagnosis, who did you tell about your diagnosis? Please tick all that apply

Yes No N/A My husband/wife/partner My children

Other family

My friends

My neighbours

I didn’t tell anyone

Q17 If there were people you didn’t tell about your dementia, why was this?

Q18 Please tell us which FIVE forms of support would have been most helpful to you in the first 12 months after you were diagnosed? You can include services which you would have like to receive but which weren’t available to you.

Information about dementia

Information about services in my area

A social or support group Counselling

Named support worker

Domiciliary care package

Befriender

Regular meetings with my GP

Support for my carer

Q19 Is there anything else you would like to tell us about your experience of receiving a diagnosis of dementia?

Section four: About you

This section asks questions about you. These questions help us ensure we reach the right people with this survey.

Q20 How old are you? Under 55 55-64 65-74 75-84 85-94 95+

Q21 Where did you live at the time of your diagnosis?

Blaenau Gwent Merthyr Tydfil

Bridgend Monmouthshire

Caerphilly Neath Port Talbot

Cardiff Newport

Carmarthenshire Pembrokeshire

Ceredigion Powys

Conwy Rhondda Cynon Taf

Denbighshire Swansea

Flintshire Torfaen

Gwynedd Vale of Glamorgan

Isle of Anglesey Wrexham

I was not living in Wales when I received my diagnosis

Q22 What type of dementia have you been diagnosed with? Please tick all that apply

Alzheimer’s disease

Vascular dementia

Fronto-temporal dementia Dementia with Lewy bodies

Thank you for your help Alzheimer’s Society hopes to run focus groups across Wales to hear more about people’s experiences of receiving a diagnosis of dementia. Would you be happy for Alzheimer’s Society to contact you to invite you to a focus group if one is arranged in your area? Yes  No 

Would you be interested in receiving more information about how to share your experiences with journalists as an Alzheimer’s Society media volunteer? Yes  No 

Would you like more information about Alzheimer's Society's campaigns and how to get involved? Yes  No 

If you have answered yes to these questions please write your name and contact details below so that we can get in touch.

The information you have provided will be handled and held in accordance with the Data Protection Act 1998. We will keep your completed questionnaire on file for three years then destroy it. Analysis of the responses to this questionnaire will be done by Alzheimer's Society.

For confidential advice, information and support, call Alzheimer's Society's National Dementia Helpline on 0300 222 11 22. The service is open seven days a week, with trained advisers who understand the needs of people affected by dementia. You can also email enquiries to [email protected]