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Memory and Reminiscence within BME Communities

Researching the need for culturally appropriate reminiscence resources across a range of ethnic groups in Leeds.

March 2015

Page 1 Memory and Reminiscence Report

Memory and Reminiscence Report Page 2

Contents Foreword ........................................................................................................... 3 Research Method .............................................................................................. 4 Participant Demographics ................................................................................. 5 Reminiscence Therapy Awareness .................................................................. 8 Dementia Awareness ...................................................................................... 11 Alzheimer’s Disease Awareness ..................................................................... 14 Culturally Appropriate Reminiscence Resources ........................................... 17 Childhood Memories from Different Cultures .................................................. 22 Additional Experience of Dementia and Reminiscence .................................. 36 Summary of Findings ...................................................................................... 39 Future Aims ..................................................................................................... 41 References ...................................................................................................... 42 Appendix .......................................................................................................... 44


Foreword The Memories Reminiscence Activity Library is a library at home service for family members and friends of those living with dementia. Resources include photographs of the past, nostalgic games and activities. The service was set up to be as accessible as possible, providing a free delivery and collection service but it soon became clear that it was predominately those from White British background who were accessing the service. From initial consultation the lack of culturally appropriate resources seemed to be the main barrier for those from BME communities wanting to access the service. With funding from Jimbo’s Fund, this small research project was able to take place. The research summarised in this report was carried out to determine whether or not there is a need for the creation of these resources. It is hoped that this research project will also help organisations that work closely with minority ethnic groups to tackle dementia awareness and enable them to signpost to the Memories Reminiscence Activity Library with confidence. This report has been compiled by Lisa Stones.


Research Method Over the past year, the part-time Project Development Officer has been developing new and existing partnerships in order to research dementia and reminiscence therapy awareness within BME communities. A short survey was developed, titled Memory and Reminiscence Survey (appendix 1), to ascertain the current awareness of dementia and reminiscence therapy among a variety of ethnic groups. The word ‘dementia’ was not used in the survey title or introductory paragraph to increase participation as there is still stigma attached with this word in some cultures. A free prize draw with a £25 Marks and Spencer voucher was also used to encourage participation. Factual information on reminiscence therapy, dementia and Alzheimer’s disease was included to help raise awareness and improve knowledge. There were also questions regarding the use of reminiscence resources and whether the participant knew anyone living with memory problems. In addition, it created an opportunity to start to collate memories of past toys/games, music/entertainers/singers, news stories, landmarks/places, clothing/fashion and hobbies/pastimes. Incorporating a wide range of topics and decades meant all participants could respond, regardless of age. Initial research was carried out on the survey compilation in order to produce an appropriate questionnaire that would generate the most responses. Paper copies of the survey were distributed to local community groups, organisations, mosques, Sikh temples, etc. The survey was also available to complete online and promoted via community newsletters and social media. The link was shared by organisations such as Healthwatch Leeds, an organisation set up to give the public a voice on health and social care services, Leeds Black Health Initiative, a community engagement organisation, and Touchstone, an organisation providing a range of services to improve health and wellbeing among a variety of ethnic groups. In addition to the questionnaire, several group consultations were carried out with partner organisations such as Leeds Irish Health and Homes, Touchstone and neighbourhood network schemes, all of which are organisations working with minority ethnic groups and older people in Leeds. Attendees at the group consultations were asked the survey questions in an informal setting and a minute taker made note of their responses. An interpreter was used when required.


Participant Demographics A total of 150 responses to the survey were received: 94 paper entries, 26 online entries and 30 through group participation. However, not all participants answered every question. Ethnic Origin of Participants The ethnic group options provided by Leeds City Council were used on the survey. Even though the majority of the promotion for the survey and group sessions was carried out within BME communities, almost half of the responses were from White English participants. This may indicate that those from BME communities are more reluctant to speak openly about dementia and reminiscence therapy.

Key: ‘Asian / Asian British’ includes Bangladeshi, Chinese, Indian, Kashmiri,

Pakistani and Asian Other. ‘Black / Black British’ includes African, Caribbean and Black Other. ‘Mixed / Multiple’ includes White / Asian, White / Black African, White /

Black Caribbean and Mixed Other. ‘White Other’ includes Gypsy, Irish, Northern Irish, Scottish, Welsh and

White Other.


Location of Participants The 33 Leeds electoral wards were used to record the residential location of participants. The majority of which were recorded as living in the wards surrounding the Care and Repair Leeds office, such as ‘Chapel Allerton’, ‘Roundhay’ and ‘Gipton and Harehills’. The ward population for these areas of Leeds have a higher BME population than the average for the whole of Leeds. (Observatory.leeds.gov.uk, 2015). Responses were received from 27 of the 33 wards, covering both affluent and deprived areas of the city. This should give a good overview of dementia and reminiscence therapy awareness across the whole of Leeds.

Gender of Participants Of those that participated in the survey and group sessions, 20.6% were male and 79.3% were female. The reason for this imbalance is unknown and a more equal 50.0% split would have been preferred. However, the lack of male participation may imply that men are less inclined to participate in surveys or be less open to talking about dementia and reminiscence. It is estimated that 62.0% of people with dementia are female and 38.0% are male (Alzheimer's Research UK, 2015), which may also be a possible cause of the low survey participation in males.


Age of Participants A wide range of age groups participated in the survey and group sessions, 61.8% of which were more than 50 years old. The broad range of age groups participating in the research will give a better picture of dementia and reminiscence awareness among all generations. Responses were received from age ranges currently experiencing dementia and those age ranges who may experience it in the future.

The fact that younger people engaged in the research is a good indication that the next generation of those to develop dementia will be more aware of the symptoms, and so more informed in their later life. It should also prove beneficial to the current generation of those developing demenita, as their younger relatives will be aware of the causes and symptoms to look out for.


Reminiscence Therapy Awareness Q: Have you heard of “reminiscence therapy”? A summary of the responses is shown in the table below. Ethnic Group (# of responses) No Maybe Yes Asian / Asian British (37) 78.3% 0.0% 31.6% Black / Black British (14) 50.0% 14.3% 35.7% Mixed / Multiple (6) 83.3% 0.0% 16.6% White English (60) 38.3% 11.6% 50.0% White Other (11) 54.5% 0.0% 45.5% Ethnicity Unknown (2) 100.0% 0.0% 0.0% Total (130) 55.4% 6.9% 37.7%

Overall, 55.4% of participants had not heard of reminiscence therapy. Those from BME communities were generally less aware of reminiscence therapy than those from White English background.

The majority of participants had not heard of reminiscence therapy.

In particular, participants from Asian or mixed Asian / White ethnic origin were the least aware of reminiscence therapy. There is no single word which can be used to translate “reminiscence” into these community languages; it was decided to use the term “reminiscence therapy” in the survey to try and raise awareness for those who did not know what it meant. Q: Do you understand what “reminiscence therapy” is? A summary of the responses is shown in the table below. Ethnic Group (# of responses) No Maybe Yes Asian / Asian British (37) 67.6% 5.4% 27.0% Black / Black British (14) 35.7% 14.3% 50.0% Mixed / Multiple (6) 33.3% 16.6% 50.0% White English (60) 20.0% 16.6% 63.3% White Other (11) 36.3% 9.1% 54.5% Ethnicity Unknown (2) 100.0% 0.0% 0.0% Total (130) 38.5% 12.3% 49.2%


49.2% of participants said they understood what reminiscence therapy is. Unexpectedly, 18.1% of those who said they had not heard of reminiscence therapy said that they did understand what it was. This either indicates a lack of knowledge of reminiscence therapy or the question was misleading. Again, participants from Asian or mixed Asian / White ethnic origin were least understanding of reminiscence therapy, which is understandable if the word “reminiscence” cannot be translated into their language. The text below was then included in the survey to raise awareness of reminiscence therapy. Words which could be translated into the community languages were used in order to explain what “reminiscence therapy” means. Reminiscence therapy involves talking about things from the past, using prompts such as photos, familiar objects or music. Reminiscence therapy can improve mood, wellbeing and memory. Q: Does the above information help you understand what “reminiscence therapy” is? A summary of the responses is shown in the table below. Ethnic Group (# of responses) No Maybe Yes Asian / Asian British (37) 10.8% 2.7% 86.5% Black / Black British (13) 15.4% 15.4% 69.2% Mixed / Multiple (6) 0.0% 0.0% 100.0% White English (60) 0.0% 5.0% 95.0% White Other (10) 0.0% 0.0% 100.0% Ethnicity Unknown (2) 0.0% 0.0% 100.0% Total (128) 4.7% 4.7% 90.6%

Almost all of the participants indicated that the information on the survey helped to improve their understanding of reminiscence therapy. Raising the awareness of reminiscence therapy was a key goal of the research and this would appear to have been successful.

90.6% had an improved knowledge of reminiscence therapy from taking part in the research.

Those from Black / Black British and Asian / Asian British ethnic groups agreed less so with the helpfulness of the information. The reasons for this


may have included language barriers. Further awareness raising of reminiscence therapy is clearly needed. This could include written information or brief talks in the appropriate languages at groups and activities that those from BME communities already attend.


Dementia Awareness Q: Have you heard of “dementia”? A summary of the responses is shown in the table below. Ethnic Group (# of responses) No Maybe Yes Asian / Asian British (37) 2.7% 0.0% 97.3% Black / Black British (17) 0.0% 0.0% 100.0% Mixed / Multiple (6) 0.0% 0.0% 100.0% White English (68) 0.0% 0.0% 100.0% White Other (16) 0.0% 12.5% 87.5% Ethnicity Unknown (3) 0.0% 0.0% 100.0% Total (147) 0.7% 1.4% 97.9%

Surprisingly, nearly all of the participants had heard of dementia, even those from BME communities. This may be indicative of the success of recent awareness training by other organisations in the local area. Dementia has been given a lot of attention in Leeds recently with the setting up of the Leeds Dementia Action Alliance and its push to become a dementia friendly city.

Only one participant had not heard of dementia.

Q: Do you understand what “dementia” is? A summary of the responses is shown in the table below. Ethnic Group (# of responses) No Maybe Yes Asian / Asian British (37) 5.3% 5.3% 89.5% Black / Black British (16) 6.3% 18.7% 75.0% Mixed / Multiple (5) 0.0% 0.0% 100.0% White English (67) 3.0% 9.0% 88.0% White Other (16) 0.0% 31.3% 68.7% Ethnicity Unknown (3) 0.0% 0.0% 100.0% Total (144) 3.5% 10.4% 86.1%

Overall, 86.1% of participants said they understood what dementia is. Notably, a similar percentage understood what dementia is from Asian / Asian British ethnic origin and those from White English ethnic origin. No test on the


participants’ knowledge was carried out, so the results are only accurate for the believed knowledge of the participants. Those from White Other ethnic origin were the most unsure about their understanding of dementia. In particular, 45.4% of participants from White Irish background answered ‘Maybe’ to this question. Perhaps people from this background are less confident in stating their understanding. Regardless, more dementia awareness sessions with this ethnic group are needed. In addition, a small number of participants from the Asian / Asian British and Black / Black British and White English ethnic origins stated that they had no understanding of dementia. This may indicate a need for further awareness raising among these ethnic groups. The text below was then included in the survey to raise awareness of dementia: Dementia is the medical term used to collectively describe a set of symptoms including severe forgetfulness, confusion, difficulties with problem-solving and communication. A person living with dementia may also experience changes in their mood or behaviour. Q: Does the above information help you understand what “dementia” is? A summary of the responses is shown in the table below. Ethnic Group (# of responses) No Maybe Yes Asian / Asian British (36) 2.8% 8.3% 88.9% Black / Black British (17) 11.8% 0.0% 88.2% Mixed / Multiple (6) 0.0% 0.0% 100.0% White English (68) 0.0% 2.9% 97.1% White Other (16) 0.0% 6.3% 93.7% Ethnicity Unknown (2) 0.0% 0.0% 100.0% Total (145) 2.1% 4.1% 93.8%

93.8% of participants said that the text helped their understanding of dementia. The aim to raise awareness of dementia seems to have been achieved.

93.8% had an improved knowledge of dementia from taking part in the research.


Again, those from Black / Black British and Asian / Asian British ethnic groups agreed less so with the helpfulness of the information and further awareness raising may be required. In hindsight, more information about dementia could have been provided, stating that it is not a natural part of ageing and it can affect younger people too. This may have eradicated some of the myths surrounding dementia, assisting in peoples understanding.


Alzheimer’s Disease Awareness Q: Have you heard of “Alzheimer’s Disease”? A summary of the responses is shown in the table below. Ethnic Group (# of responses) No Maybe Yes Asian / Asian British (37) 5.4% 24.3% 70.3% Black / Black British (17) 0.0% 5.9% 94.1% Mixed / Multiple (6) 0.0% 16.7% 83.3% White English (68) 0.0% 0.0% 100.0% White Other (16) 0.0% 25.0% 75.0% Ethnicity Unknown (3) 0.0% 0.0% 100.0% Total (147) 6.1% 5.5% 88.4%

Analysing these results with the comparative question for dementia, fewer participants had heard of Alzheimer’s Disease than had heard of dementia. Of those that stated their ethnicity, only those from White English background had 100% awareness of the term. All other ethnic origins showed a decreased level of awareness of Alzheimer’s Disease. In fact, 18.4% of BME participants who had definitely heard of dementia, were not sure if they had heard of Alzheimer’s Disease.

Almost a fifth of people from minority ethnic origins who had definitely heard of dementia, had not heard of Alzheimer’s Disease.

Q: Do you understand what “Alzheimer’s Disease” is? A summary of the responses is shown in the table below. Ethnic Group (# of responses) No Maybe Yes Asian / Asian British (37) 27.0% 16.2% 56.8% Black / Black British (16) 18.8% 12.5% 68.7% Mixed / Multiple (5) 0.0% 20.0% 80.0% White English (67) 7.4% 13.4% 79.1% White Other (16) 6.3% 43.7% 50.0% Ethnicity Unknown (2) 0.0% 0.0% 100.0% Total (143) 13.3% 17.5% 69.2%


Fewer participants had an understanding of Alzheimer’s Disease than had an understanding of dementia, which is expected given the results from the previous question. The decrease in understanding seems to be across the board, but those from BME origin had slightly less understanding compared to those from White English background.

24.6% of participants from minority ethnic origins who understood what dementia is, did not understand what Alzheimer’s Disease is.

Although the awareness raising of dementia would appear to have been fairly successful in the local area, information on the causes of dementia, including the most common type, Alzheimer’s Disease, still needs to be publicised. The text below was then included in the survey to raise awareness of Alzheimer’s Disease: Alzheimer’s Disease is a disease of the brain and is the most common cause of dementia. There are other diseases that cause dementia, such as “Vascular Dementia” and “Pick’s Disease”. Q: Does the above information help you understand what “Alzheimer’s Disease” is? A summary of the responses is shown in the table below. Ethnic Group (# of responses) No Maybe Yes Asian / Asian British (37) 8.1% 13.5% 78.4% Black / Black British (17) 5.9% 11.8% 82.3% Mixed / Multiple (6) 0.0% 16.7% 83.3% White English (68) 2.9% 10.3% 86.8% White Other (16) 0.0% 6.3% 93.7% Ethnicity Unknown (1) 0.0% 0.0% 100.0% Total (145) 4.2% 11.0% 84.8%

Analysing the results from this question with the comparative questions for reminiscence therapy and dementia, the text on Alzheimer’s Disease has had the least amount of impact. 84.8% of participants said that the information helped their understanding, compared with 90.6% for reminiscence therapy and 93.8% for dementia.


These figures may have been due to it being difficult to explain in sentences that are simple enough for translation purposes. In hindsight, more information about the causes could have been included, possibly relating it to another disease. For example a comparison of dementia to jaundice as a symptom and Alzheimer’s Disease to liver failure as a cause of the symptom could have been made.


Culturally Appropriate Reminiscence Resources The next section of the survey included the following paragraph explaining the Memories Reminiscence Activity Library and what is meant by “reminiscence resources”: If you know someone living with memory problems, Care and Repair Leeds offer a free Memories Reminiscence Activity Library service, where you are able to borrow photographs of past entertainers, fun games and activities to help communication. Items are delivered and collected free of charge. Current items mainly cover British history but we would like to expand the range for other cultures. Q: Do you think these items should be available to suit a variety of ethnic groups? A summary of the responses is shown in the table below. Ethnic Group (# of responses) No Maybe Yes Asian / Asian British (37) 2.7% 5.4% 91.9% Black / Black British (16) 0.0% 18.8% 81.2% Mixed / Multiple (6) 16.6% 0.0% 83.3% White English (66) 0.0% 6.1% 93.9% White Other (14) 0.0% 0.0% 100.0% Ethnicity Unknown (1) 0.0% 0.0% 100.0% Total (140) 1.4% 6.4% 92.2%

Almost all of the participants thought reminiscence items should definitely be available to suit a variety of ethnic groups. There were just two participants that said there was no need for resources that suited a variety of ethnic groups. Surprisingly, these participants were from ethnic groups in which reminiscence resources are currently difficult to source.

98.6% indicated a potential need for culturally appropriate reminiscence resources.

This clearly demonstrates the need to create or source reminiscence resources that are suitable to a range of ethnic groups for the Memories Reminiscence Activity Library.


Q: Do you think using reminiscence items would be enjoyable? A summary of the responses is shown in the table below. Ethnic Group (# of responses) No Maybe Yes Asian / Asian British (36) 0.0% 11.1% 88.9% Black / Black British (16) 0.0% 43.8% 56.2% Mixed / Multiple (6) 0.0% 33.3% 66.7% White English (65) 1.5% 7.7% 90.8% White Other (12) 0.0% 8.3% 91.7% Ethnicity Unknown (1) 0.0% 0.0% 100.0% Total (136) 0.7% 14.0% 85.3%

85.3% of participants thought that reminiscence resources would definitely be enjoyable to use. Just 1 participant, from the White English ethnic origin, answered ‘No’ to this question.

Nearly all participants thought reminiscence resources might be enjoyable to use.

Unexpectedly, the two participants that indicated that there was no need for culturally appropriate resources, answered ‘Yes’ or ‘Maybe’ to this question. This may imply a lack of understanding of the first question, or that they feel the current range of resources is sufficient. Q: Would you consider borrowing reminiscence items to use with someone living with memory problems? A summary of the responses is shown in the table below. Ethnic Group (# of responses) No Maybe Yes Asian / Asian British (37) 5.4% 8.1% 86.5% Black / Black British (13) 0.0% 53.8% 46.2% Mixed / Multiple (6) 16.7% 16.7% 66.6% White English (59) 3.4% 13.6% 83.0% White Other (12) 8.3% 33.3% 58.4% Ethnicity Unknown (0) - - - Total (127) 4.7% 18.1% 77.2%


The majority of participants said they may consider borrowing the items, with 121 out of 127 answering ‘Yes’ or ‘Maybe’ to this question.

95.3% of participants may consider borrowing reminiscence items to use with someone living with dementia.

Unusually, some participants who said they might enjoy using reminiscence resources indicated that they would not consider borrowing them to use with someone living with memory problems. This may be due to a lack of confidence, which was highlighted in some of the group sessions that were carried out. Some participants felt that using the resources in a group setting would be much easier as they did not have the confidence to use the resources within their own home on a one to one basis in the first instance. The Memories Reminiscence Activity Library should proceed with creating or sourcing culturally appropriate resources and allow partner organisations to borrow the resources to use within a group setting. This would enable family members and carers of those from minority ethnic groups living with dementia to access the resources, even if they were not comfortable borrowing them directly from the service for use within their own homes. The use of volunteer befriending schemes could potentially help with this situation. If volunteers were trained in using reminiscence resources, they could visit families and build up their confidence in using the items. Q: Do you know someone with memory problems? A summary of the responses is shown in the table below. Ethnic Group (# of responses) No Maybe Yes Asian / Asian British (37) 10.8% 5.4% 83.8% Black / Black British (13) 23.1% 15.4% 61.5% Mixed / Multiple (6) 33.3% 0.0% 66.7% White English (60) 31.7% 1.7% 66.6% White Other (10) 40.0% 0.0% 60.0% Ethnicity Unknown (0) - - - Total (126) 25.4% 4.0% 70.6%

Overall, a quarter of the participants said they did not know anyone with memory problems. 83.8% of those from Asian / Asian British background said that they did; this figure is much greater than that of the other ethnic groups.


Interestingly, just four participants who indicated that they knew someone with memory problems on this question had said they would not consider borrowing reminiscence resources in the previous question. Q: Do you find it difficult to communicate with someone with memory problems? A summary of the responses is shown in the table below. Ethnic Group (# of responses) No Maybe Yes Asian / Asian British (36) 13.9% 27.8% 58.3% Black / Black British (11) 36.4% 45.4% 18.2% Mixed / Multiple (5) 40.0% 20.0% 40.0% White English (54) 37.0% 27.8% 35.2% White Other (10) 40.0% 20.0% 40.0% Ethnicity Unknown (0) - - - Total (116) 30.2% 28.4% 41.4%

Overall, 69.8% of participants indicated that they may find it difficult to communicate with people with memory problems. More importantly, 81.9% of those that answered ‘Yes’ or ‘Maybe’ to knowing someone with memory problems, answered ‘Yes’ or ‘Maybe’ to having difficulty in communicating.

81.9% of participants who may know someone with memory problems said they may find it difficult to communicate with them.

In hindsight, a fourth option of ‘Not Applicable’ could have been included as some participants may have selected ‘No’ incorrectly if they did not know anyone with memory problems. Also, 4 of the 32 participants who indicated that they did not know anyone with memory problems, answered ‘Yes’ or ‘Maybe’ to finding it difficult to communicate with them.


Q: Would you like further information on the Memories Reminiscence Activity Library and/or all Care and Repair Leeds services? Ethnic Group (# of responses) Count Asian / Asian British (38) 15 Black / Black British (17) 6 Mixed / Multiple (6) 4 White English (68) 24 White Other (16) 6 Ethnicity Unknown (5) 0 Total (150) 55

A total of 55 requests for further information were made through the surveys and group sessions. This shows that a high level of participants did want to find out more about the Memories Reminiscence Activity Library and other Care and Repair Leeds services. Each request was followed up and the appropriate information was sent out.


Childhood Memories from Different Cultures There were a range of questions in the survey and group sessions to capture childhood memories from the past from different cultures. A comparison could then be made between the current range of resources within the Memories Reminiscence Activity Library and the responses from participants. Q: What was your favourite toy / game when you were younger? More than 50 different types of toys and games were mentioned in the answers to this question. Responses that were common among a number of ethnic groups are listed in the table below.

Toy / Game A

sian

/ A

. Brit

ish

Bla

ck /

B

. Brit

ish

Mix

ed /

Mul

tiple

Whi

te

Engl

ish

Whi

te

Oth

er

Out

door

Gam

es Hopscotch 3 1 1

Whip and Top 1 4 Hide and Seek 1 1 1 Catch 1 1 Skipping 2 3 3 1 Stick and peg 1 2 Ball Playing 1 1

Spo

rts Netball 1 3

Rounders 1 1 2 Football 3 2 3 3 Cricket 3 2

Indo

or G

ames

Playing Cards (inc Jacks, Snap) 1 3 1 Playing Shops 1 1 Dolls / Action Man 5 5 4 19 4 Wooden Toys 1 1 Marbles 3 1 1 Lego 1 4 Toy / Racing Cars 1 1 1 1 Monopoly 1 1 3 Snakes and Ladders 2 1 1 1 Ludo 1 1


Some of the toys and games responses were unique to just one ethnic group. The key topics are listed below. It is these topics that may be missing from the current reminiscence resources within the Memories Reminiscence Activity Library. Further research will need to be carried out in order to determine which topics would feature in a pack of culturally appropriate resources. A full list of answers can be found in appendix 2. Asian / Asian British Kokla Chapaki A game where the players sit in a circle and one person secretly places a whip behind someone. If the person can feel the whip, they pick it up and run after the person who put it behind him/her. If the person can’t feel the whip, the player who left it there picks up the whip and starts hitting the sitting person. In either case, the person being hit is to run around the circle and sit down.

(Karachi2delhi.tumblr.com, 2015)

Kabaddi A contact sport featuring two teams of seven players. Each team sends a ‘raider’ into the other's half, who is expected to cross a line, touch as many opponents as they can and return. The defenders have to stop the raider from returning, by pinning him down.

(Wikipedia, 2015)

Gilli Danda A game which is played with a small piece of wood tapered on both sides, called the ‘gilli’. It is then hit with a larger piece of wood called the ‘danda’.

(Buzzoop Indian News, 2014)


White Other

Buzz O Bumble Wellington radio DJ Lindsay Yeo headed a family show on Radio 2ZB in the 1970s and 1980s in New Zealand. He created a cast of characters who appeared on the show and at children's events including the best-known character, Buzz O'Bumble.

(Teara.govt.nz, 2013)

Q: What was your favourite music / entertainer / singer when you were younger? More than 80 different entertainers, singers, actors were mentioned in the answers to this question. Responses that were common among a number of ethnic groups are listed in the table below.

Music / Entertainer / Singer

Asi

an /

A. B

ritis

h

Bla

ck /

B

. Brit

ish

Mix

ed /

Mul

tiple

Whi

te

Engl

ish

Whi

te

Oth

er

Mus

ic

Elvis Presley 2 1 1 Michael Jackson 3 1 Jim Reeves 1 1 Cliff Richard 3 1 Duran Duran 1 1 The Beatles 3 1 Steel Bands 2 1

Some of the entertainers were unique to the responses from just one ethnic group. The key topics are listed below. It is these topics that may be missing from the current reminiscence resources within the Memories Reminiscence Activity Library. Further research will need to be carried out in order to determine which topics would feature in a pack of culturally appropriate resources. A full list of answers can be found in appendix 3.


Asian / Asian British

Gurdas Maan An Indian singer, songwriter, choreographer, and actor. Considered one of the most notable figures in the world of Punjabi music. Gurdas Maan gained national attention in 1980 with the song "Dil Da Mamla Hai."

(Wikipedia, 2015)

Mohammed Rafi One of the most popular and respected Playback Singers of India and widely considered as the greatest singer of Indian Cinema.

(Wikipedia, 2015)

Noor Jehan A singer and actress in British India and Pakistan. Her career spanned seven decades. She was renowned as one of the greatest and most influential singers of her time in South Asia.

(Wikipedia, 2015)


Black / Black British

Mighty Sparrow A calypso singer, songwriter, and guitarist of Trinidadian citizenship. Known as the "Calypso King of the World", he is one of the best-known and most successful calypsonians.

(Wikipedia, 2015)

Reggae Music A music genre that originated in Jamaica in the late 1960s. It is a particular music style that was strongly influenced by traditional mento and calypso music, as well as American jazz and rhythm and blues.

(Wikipedia, 2015)

White Other

Accordian Music Music played by a family of box-shaped musical instruments which are played by compressing or expanding the bellows while pressing buttons or keys.

(Wikipedia, 2015)


Q: What was your most memorable news story when you were younger? Almost 40 different news stories and memorable people were mentioned in the answers to this question. Responses that were common among a number of ethnic groups are listed in the table below.

News Story

Asi

an /

A. B

ritis

h

Bla

ck /

B

. Brit

ish

Mix

ed /

Mul

tiple

Whi

te

Engl

ish

Whi

te

Oth

er

New

s

John F Kennedy Assassination 1 5 2 First man on the moon / in space 1 1 8 Queens Diamond Jubilee 1 1 Yorkshire Ripper 1 2 WWII - planes, royal navy, SA involvement, Mirpur (migration),

11 1 2

Iranian Embassy 1 1 Princess Diana - Death 3 1 3 Princess Diana / Prince Charles Wedding

1 2

Princess Diana 1 1 Some of the news stories were unique to the responses from just one ethnic group. The key topics are listed below. It is these topics that may be missing from the current reminiscence resources within the Memories Reminiscence Activity Library. Further research will need to be carried out in order to determine which topics would feature in a pack of culturally appropriate resources. A full list of answers can be found in appendix 4. Asian / Asian British

Independence Day 15th August 1947 India attained independence following an Independence Movement noted for largely nonviolent resistance and civil disobedience led by the Indian National Congress.

(Wikipedia, 2015)


Partition of India / Pakistan The partition of the British Indian Empire that led to the creation of the sovereign states of the Dominion of Pakistan and the Union of India on 15 August 1947.

(Wikipedia, 2015)

Ghandi The preeminent leader of Indian independence movement in British-ruled India. Employing nonviolent civil disobedience, Gandhi led India to independence and inspired movements for civil rights and freedom across the world.

(Wikipedia, 2015)

Q: What was your most memorable landmark / place when you were younger? Almost 60 different landmarks and places were mentioned in the answers to this question. Responses that were common among a number of ethnic groups are listed in the table below.

Landmark / Place

Asi

an /

A. B

ritis

h

Bla

ck /

B

. Brit

ish

Mix

ed /

Mul

tiple

Whi

te

Engl

ish

Whi

te

Oth

er

Land

mar

k London 1 4 Blackpool 2 3 Roundhay Park 1 1 1 Scotland 1 2

Gen

eral

Home 1 2 2 School 1 2 Beach / Seaside 2 1 3 2 Holidays Abroad 4 1


Some of the landmarks and places were unique to the responses from just one ethnic group. The key topics are listed below. It is these topics that may be missing from the current reminiscence resources within the Memories Reminiscence Activity Library. Further research will need to be carried out in order to determine which topics would feature in a pack of culturally appropriate resources. A full list of answers can be found in appendix 5. Asian / Asian British

Harmandir Sahib Informally referred to as the "Golden Temple", this is the holiest Sikh gurdwara located in the city of Amritsar, Punjab, India.

(Wikipedia, 2015)

Hyderabad The capital of the southern Indian state of Telangana and the capital of Andhra Pradesh, by right.

(Wikipedia, 2015)

Tomb of Abdullah Shah Abdullah Shah Ghazi is considered to be patron saint of Karachi, Sindh, Pakistan. He is widely revered in Pakistan. The Mausoleum and Dargah of Abdullah Shah Ghazi is located in Saddar Town in Karachi.

(Wikipedia, 2015)

Taj Mahal A white marble mausoleum located in Agra, Uttar Pradesh, India. The mausoleum is widely recognized as "the jewel of Muslim art in India" and remains as one of the world’s most celebrated structures and a symbol of India’s rich history.

(Wikipedia, 2015)


Black / Black British

Brimstonehill St. Kitts W.I. A well-preserved fortress on a hill on the island of St. Kitts in the Federation of St. Christopher (St. Kitts) and Nevis in the Eastern Caribbean.

(Wikipedia, 2015)

Mixed / Multiple Brunei Officially the Nation of Brunei, the Abode of Peace, is a sovereign state located on the north coast of the island of Borneo in Southeast Asia.

(Wikipedia, 2015)

Q: What was your most memorable clothing / fashion item when you were younger? Almost 50 different clothing items were mentioned in the answers to this question. Responses that were common among a number of ethnic groups are listed in the table below.

Clothing / Fashion Item

Asi

an /

A. B

ritis

h

Bla

ck /

B

. Brit

ish

Mix

ed /

Mul

tiple

Whi

te

Engl

ish

Whi

te

Oth

er

Uni

sex Shorts 2 2 1

Jeans 1 4 Flares 1 4 1 Dungarees 1 3

Fem

ale

Dresses 3 1 4 1 Skirts 1

Mini Skirt 1 4 1 Frilly Garments / Lace Trimmings 1 1 Platform Shoes 1 3


Some of the clothing items were unique to the responses from just one ethnic group. The key topics are listed below. It is these topics that may be missing from the current reminiscence resources within the Memories Reminiscence Activity Library. Further research will need to be carried out in order to determine which topics would feature in a pack of culturally appropriate resources. A full list of answers can be found in appendix 6. Asian / Asian British

Kurta Pajama Consisting of two pieces of garments, this is one of the basic clothing of the Indian men. The first garment is a kurta that is like a loose long shirt almost reaching the knees, whereas the second one is the pajama, which is a lightweight drawstring trouser.

. (Utsav Fashion, 2015)

Saree A South Asian female garment that consists of a drape that is typically wrapped around the waist, with one end draped over the shoulder, baring the midriff.

(Wikipedia, 2015)

Q: What was your favourite hobby / pastime when you were younger? Almost 50 different hobbies and pastimes were mentioned in the answers to this question. Responses that were common among a number of ethnic groups are listed in the following table.


Hobby / Pastime

Asi

an /

A. B

ritis

h

Bla

ck /

B

. Brit

ish

Mix

ed /

Mul

tiple

Whi

te

Engl

ish

Whi

te

Oth

er

Pas

t tim

es Playing outside 4 1 2 15 1

Bike Riding 1 6 4 Horse Riding 1 1 Climbing / Climbing Trees 2 1 1 Socialising 1 1 Shopping 1 1 3

Act

iviti

es

Reading 1 1 1 Studying 1 1 Gardening 1 1 Swimming 1 2 2 Singing 1 1 Dancing 1 12 2 Radio/Music (gramophones) 2 1 1 Cinema/TV (inc ABC Minors) 6 1 Live Concerts / Theatre 1 1 Playing the Piano 1 2

Cra

fts Sewing 3 2 2

Knitting 4 1 1 Cooking/Baking 1 1 1

Some of the hobbies and pastimes were unique to the responses from just one ethnic group. The key topics are listed below. It is these topics that may be missing from the current reminiscence resources within the Memories Reminiscence Activity Library. Further research will need to be carried out in order to determine which topics would feature in a pack of culturally appropriate resources. A full list of answers can be found in appendix 7. Asian / Asian British

Chakki A stone pot instrument used to grind flour.

(My perspectives and experiences,

2012)


Phulkari An embroidery technique literally meaning flower working, which was at one time used as the word for embroidery. In time the word Phulkari became restricted to embroidered shawls and head scarfs.

(Wikipedia, 2015)

Charkha A spinning wheel device for spinning thread or yarn from natural or synthetic fibres. The tabletop or floor charkha is one of the oldest known forms of the spinning wheel.

(Pixshark.com, 2015)

Chimta A traditional percussion instrument of South Asia, with small brass jingles. This instrument is often used in popular Punjabi folk songs, Bhangra music and the Sikh religious music known as Gurbani Kirtan.

(Wikipedia, 2015) Black / Black British

Embroidery The handicraft of decorating fabric or other materials with needle and thread or yarn. Embroidery may also incorporate other materials such as metal strips, pearls, beads, quills, and sequins.

(Wikipedia, 2015)


White Other Harmonica A wind instrument played by using the mouth to direct air into and out of one or more holes along a mouthpiece. Behind the holes are chambers containing a reed, which is a flat elongated spring typically made of brass, stainless steel, or bronze, which is secured at one end over a slot that serves as an airway. When the free end is made to vibrate by the player's air, it alternately blocks and unblocks the airway to produce sound.

(Wikipedia, 2015)

Fiddle A bowed string musical instrument more often called a violin. There are no real distinctions between violins and fiddles, though more primitively constructed and smaller violins are more likely to be considered fiddles.

(College, 2015)

Q: Is there anything else you would like to tell us about when you were younger? This question gave the opportunity for participants to mention other key memories from their past that might not have been covered in the other questions. Not everyone wrote something for this questions, but 40 different responses were received. Some of the responses were common among more than one ethnic group, and are listed in the table below.

Other Childhood Memories

Asi

an /

A. B

ritis

h

Bla

ck /

B

. Brit

ish

Mix

ed /

Mul

tiple

Whi

te

Engl

ish

Whi

te

Oth

er

Gen

eral

Being Young Was Fun 1 1 Animals / Farm Working 1 5 Puzzles / Arithmetic / Crosswords 1 1 1 Working in Mills 2 1


Due to the nature of the question, most of the answers were unique to just one ethnic group. Some of these topics may be missing from the current reminiscence resources within the Memories Reminiscence Activity Library. More research would be needed to see if these topics were suitable for more than one ethnic group. A full list of answers can be found in appendix 8. Asian / Asian British

Moving to England Many arrived in England by boat from India shortly after partition in 1948, lured by the promise of employment. Many hundreds of thousands came from India, Pakistan and the West Indies not just for short-term work, but settling for good.

(Bl.uk, 2015)

Tanga Carriages A light carriage drawn by horses used for transportation in India, Pakistan, and Bangladesh. They have a canopy over the carriage with a single pair of large wheels.

(Wikipedia, 2015)

White Other

Working on a Farm Many Irish children helped out on the family farm. Farmers kept pigs and cows. Some also kept some sheep, horses, turkeys, geese and chickens. The fowl were kept to produce eggs, which would be consumed for home use or sold at the fair.

(Claregalway.info, 2015)


Additional Experience of Dementia and Reminiscence Q: Is there anything else you would like to tell us about your experience of dementia and/or reminiscence? This question was used to give participants the chance to speak openly about their experiences of dementia and reminiscence. Not all participants chose to answer, which is expected. A summary of the responses per ethnic group is below. A full list of the answers can be found in appendix 9. Asian / Asian British (10 responses) Responses regarding dementia from participants from Asian / Asian British background were very personal. The majority mentioned a family member who has had dementia and there was a real emphasis on the impact a loss of memory had made. This reiterates the results of a previous question where a high percentage of this ethnic group knew someone living with dementia.

“In last days of my father, he was not able to recognise me. It was a painful experience.”

There was also one mention that the meaning of dementia and Alzheimer’s Disease was unclear, again showing that more awareness sessions are required. A particular comment regarding self-diagnosis was interesting, implying that some people are trying to diagnose themselves rather than seeking medical advice.

“I think people are not sure whether they actually have dementia because the symptoms are quite general.”

A few comments were made regarding reminiscence, in particular the style and content of the proposed culturally appropriate reminiscence resources. One mentioned the fact that individual cards would be better as they would be less confusing, another stated that items from their background would be useful.

“Objects from Sikh background would be really helpful.”


Black / Black British (6 responses) The responses about dementia from participants from Black / Black British background were more factual, with fewer references to individual struggles.

“Most people with dementia remember things that happened in the past, but less likely to remember things which are current.”

However, there was still mention of the negative impact the disease can bring to a family, indicating that this ethnic group have had some level of personal experience of dementia.

“A very lonely existence, especially for the person who has it. Very often it is a very anxious time for both patient and carer.”

In addition, there were a couple of participants who indicated that they themselves had dementia, and talked personally about their memory problems and reminiscence experience. Mixed / Multiple (1 response) Due to the low response rate of this ethnic group, no overall assumptions can be made. However, the one response that was received again referred to the difficulties faced when living with dementia.

“It's difficult as a carer.”

White Other (3 responses) Again, no overall assumptions can be made for this ethnic group due to the low number of response. However, one answer mentions the personal benefits they have experienced from singing.

“I love singing and it really helps me clear my mind – I have Vascular Dementia and Alzheimer’s Disease and tinnitus.”


White English (23 responses) A large number of participants from the White English ethnic origin chose to write an answer to this question. Both factual statements and personal experience were received, mentioning mothers, fathers, grandparents and other family members. Similar to the other ethnic groups, the majority of the responses focussed on the negative aspects of their experience of dementia, including memory loss implications, difficulties faced, a reluctance to get help and lack of information and advice for those seeking help.

“It is very upsetting to see the frustration she experiences when she doesn't know what she's doing or where she is.”

However, one participant spoke very highly of charities who are making a difference to people living with dementia, recommending other families make use of the services available.

“Carers and family of people with dementia should contact dementia charities to educate themselves in order to help their loved one.”

Comments were received highlighting the benefits of reminiscence therapy, both on a one to one and in a group setting. Participants mentioned talking about past memories is much more beneficial than talking about recent events.

“It is important for people to be told about dementia and how reminiscence activity can help.”


Summary of Findings The findings from the participant demographics may indicate that talking openly about dementia is more accepted among the White English population, and more so among females than males. The majority of participants had not heard of reminiscence therapy with those from Asian or mixed White / Asian ethnic groups were least aware. However, 90.6% indicated an improved knowledge of reminiscence therapy from taking part in the research. Those from Black / Black British and Asian / Asian British agreed less so with the helpfulness of the text, and further awareness raising among these ethnic groups is needed. Only one participant had not heard of dementia, with 86.1% of participants indicated that they understood what is was. Those from White Irish background were most unsure about their understanding and so further awareness raising of dementia among this ethnic group is recommended. 93.8% of participants indicated an increased knowledge of dementia from taking part in the research. Again, those from Black / Black British and Asian / Asian British agreed less so with the helpfulness of the text, and so the awareness raising should include both reminiscence therapy and dementia. Fewer participants had heard of Alzheimer’s Disease than had heard of dementia. In fact, almost a fifth of people from a BME community that had definitely heard of dementia, were not sure if they had heard of Alzheimer’s Disease. 84.8% of participants indicated an increased knowledge of the disease from taking part in the research, which implies the help text was the least informative of the three terms. Awareness of Alzheimer’s Disease among all ethnic groups needs to be addressed. 92.2% of participants thought that reminiscence items should definitely be available to suit a variety of ethnic groups. Just one participant thought using the items would not be enjoyable and 95.3% said they would consider borrowing reminiscence resources to use with someone with dementia. Those from the Asian / Asian British ethnic group were most likely to know someone living with memory problems. Worryingly, 81.9% of all participants who may know someone living with memory problems, said that they may find it difficult to communicate with them. The results of the childhood memories section were interesting, and highlighted a wide range of topics that are currently missing from the Memories Reminiscence Activity Library. Further research into the content for


culturally appropriate reminiscence resources is required to ensure the responses are also remembered by the wider community before the creation of these items. The analysis of the ‘experience of dementia and reminiscence’ question indicate that all ethnic groups have had some experience of living with dementia. Those from Asian / Asian British background spoke more about personal experiences of dementia, which reflects the high percentage of this ethnic group who knew someone living with memory problems. Participants from the Black / Black British ethnic group had indicated that they were the lowest percentage of those that knew someone living with memory problems. This, perhaps, explains why the responses to the open question were much more factual. In general, those from the White English background spoke most positively about dementia and reminiscence, however other ethnic groups stated the need for items that would trigger memories from their culture.

The results of the research clearly demonstrate the need for culturally appropriate reminiscence resources.


Future Aims During the research it has become clear that there is a definite need for culturally appropriate reminiscence resources within the Memories Reminiscence Activity Library. Sourcing existing resources for BME groups has been unsuccessful. With future funding, Care and Repair Leeds would work with partner organisations to develop new resources to fill this gap. The contacts made while running the group research sessions started real conversations around creating resources using the memories and stories of the groups involved. Using the responses to the survey as a starting point, further research into the content of culturally appropriate reminiscence resources is required to ensure the responses are remembered by the wider BME community. Focus groups could be held with each BME communities to collate additional memories and stories from their past. By obtaining photographs and items that represent their memories, reminiscence resources could be created for use within groups and individual families. Running full awareness training on reminiscence therapy, dementia and Alzheimer’s Disease alongside these focus groups would be required to raise awareness of these topics. Handouts in community languages may also prove beneficial.

Actions: Raise awareness of dementia and reminiscence therapy among

Black / Black British and Asian / Asian British ethnic groups. Raise awareness of dementia among White Irish ethnic group. Raise awareness of Alzheimer’s Disease awareness among all

ethnic groups. Further research into the content for culturally appropriate

reminiscence resources is required to ensure the responses are also remembered by the wider community.

Obtain photographs and items that represent the past memories within BME communities to create culturally appropriate reminiscence resources.

The resources will be invaluable to groups and individuals, as they will provide visual stimulation of past memories. Giving people the confidence to talk more openly about their memory will help to reduce stigma and emotional isolation by breaking down barriers within families and communities.


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Appendix Appendix 1: Memory and Reminiscence Awareness Survey A copy of the paper survey is on the following four pages.






Appendix 2: Favourite Toy / Game Asian / Asian British Kokla Chapaki Kabaddi Gilli Danda Hockey Black / Black British Athletics Cat’s Cradle Subbuteo Football Game White Other Egg and Spoon Races Ring a Roses Musical Chairs Buzz O Bumble Poi

White English Hoola Hoop Spinning Top Rugby Tennis Teddy Bears Meccano Etch a Sketch Kaleidoscopes Scrabble Guess Who Hungry Hippos Frustration Nintendo

Appendix 3: Favourite Entertainer / Singer Asian / Asian British Gurdas Maan Mohammed Rafi Noor Jehan Lata Mangeshkar Surinder Kaur Nusrat Fateh Ali Khan Wrestlers: Dara Singh, Saif, Gurdawar Shanker Black / Black British Might Sparrow Lord Kitchener Barry White Bob Marley The Osmonds Toots & the Maytals Calypso Music Reggae Music

Mixed / Multiple Tina Turner Creedence Clearwater Revival The Jackson 5 White Other Bing Crosby Doris Day John McCormack Margaret Barry Bing Crosby David Essex Big Tom and the Mainliners Mi Sex Kapa Haka Groups Radio Luxembourg Irish Music Accordian Music


White English Frankie Laine Johnnie Ray Billy Fury Joni Mitchell James Taylor Dana Madonna David Bowie Jason Donovan David Cassidy Des O'Connor Michael Barrymore Abba Diana Ross and the Supremes

Roxette Eurythmics Erasure Simon and Garfunkel The Rolling Stones The Monkees Deep Purple T Rex Gang of Four Billy Cotton Band Show Black and White Minstrels Pinky and Perky Sooty Arthur Askey Hawaiian Music

Appendix 4: Most Memorable News Story Asian / Asian British Independence Day 1947 Partition of India / Pakistan Ghandi Foot and mouth China / Indian War Pakistan / India War Black / Black British Cricket Team Winning the Series Princess Royal Mixed / Multiple Twin Towers Tripoli White Other Apartheid New Zealand vs South Africa Elvis Presley - Death

White English Indian Prime minister being shot Cuban Missile Crisis Coronation Miners Strike Hillsborough Disaster Moors Murders Dunblane Shooting Abergavenny School Disaster Herald of Free Enterprise Disaster Madeline McCann Kidnap Mary Rose (Boat) Rescue Great Train Robbery Christmas Charity Songs Argentinian War Biafran Crisis King George VI – Death Ayrton Senna – Death


Appendix 5: Most Memorable Place Asian / Asian British India Pakistan Africa Harmandir Sahib Hyderabad Dome of Abdula Shah Taj Mahal Black / Black British Potternewton Park Brimstonehill St. Kitts W.I. Ilkley Moor Rivers Mixed / Multiple Brunei Tropical World York White Other Beehive Wellington New Zealand Belfast (Victoria Park, City Hall) Dublin Farms / Villages

White English Scarborough Mablethorpe Bournemouth Salts Mill, Saltaire White Cliffs of Dover / Ferry Port Hornsea Filey / Filey Brigg Cornwall Felixstowe Ullswater Haven Holidays Stonehenge Halifax Elland Road Temple Newsam House Leeds Mecca Schofields Store Old Ford Green Quarry Hill Flats Leeds Town Hall ABC Cinema Wakefield Batley Variety Club Greyfriars Bobby Emley Moor Wales Woods & Countryside

Appendix 6: Most Memorable Clothing Item Asian / Asian British Turban and Shirt Kurta Pajama Lengha Saree Salwar Kameez Shalwar trousers Jumpsuits Chokers

Black / Black British Winkle Pickers Baggy Jeans Baby Doll Nighties Mixed / Multiple Chelsea Boots Jelly Shoes Handbags


White Other Crombie Overcoat Large Shirt Collars Donkey Jacket Paisley shirts Homemade / 2nd Hand Clothing Wellies Gym Slip

White English Overalls Ra Ra Skirt Hot Pants Trouser Suit Shell Suit Oxford Bags Tartan Trew Trousers High Waist Trousers Woolly Stockings Leggings Denim Jackets Body Warmer Gummi Bands Scrunchy Doc Martins Suede Boots Peep Toe Heels GAP / Reebok Classics

Appendix 7: Favourite Hobby / Pastime Asian / Asian British Electronic gadgets Gossiping Friends Family time Chakki (stone pot) Phulkari (like weaving) Criss Cross (noughts and crosses) Charkha (fabric maker) Weaving Flute Chimta (symbols on stick) Tabla (drums) Dholki (drums) Painting Black / Black British Picnicking Embroidery Guitar

White Other Skateboarding Berry Picking Harmonica Fiddle White English Swings and Roundabouts Typewriter Telescope Writing Computer Programs Flower Pressing Drawing Taking Things Apart Playing Music / Records Art

Appendix 8: Other Childhood Memories Asian / Asian British Sweets School - coming home for lunch Moving to England (inc boats) Tanga transport Christmas time – stocking was an actual man’s sock – with a penny, an apple, orange, a twist (greaseproof paper) of peanuts (monkey nuts), an exercise book and a pencil. Under the tree was a present of a book/and or jigsaw. Factories Iron works Woodwork Corner Shops Black / Black British Fairy Tales While growing up in West Indies we were taught mainly things about England and was surprised when I arrived in England that its history was unknown to the English kids. I was a 'loner' always thinking, wanted to be a nun / nurse / lecturer in history / literature, and to visit England, the motherland, and live the history poems and songs. Entering spelling bee contests. Competing against different schools on the island for trophies. White Other Camping Travelling Rossary Beads Holy Medals The poverty that existed in the mid 70s - early 80s Very much a village where everybody looked out for each other. Had goose at Christmas, not turkey! Worked 6am - 6pm for £5. Baby of 14. After the war, saw advertisements for workers (doctors, nurses etc) to come to England Working on a farm – milking cows, picking fruit etc Monday market day – sold turkeys etc Very large families No cooker or oven so used fire and coal to cook & bake bread Poorer families – worked in trades: engineering, building, scaffolding etc.


White English Caravan Holidays Making Dens The 1970s was Punk. Not just Abba and Disco! Trouble free playing in the street Had a lovely childhood - playing in the fields, woods, cycling and lots of friends where I lived - a very young estate. Life seemed to be less hectic and complicated. As children we were allowed to play and roam free. Boys and girls played together. We played football, cricket, rounders. In the school holidays we went to the local park and woods and fields. We would take a snack, usually a jam sandwich and a drink of water. We could be out all day, but had to be back for tea (evening meal) Food - angel delight instant whip Appendix 9: Experience of Dementia and Reminiscence Asian / Asian British “One of our relations had dementia - would forget if he had meals or not.” “I used to talk to my Grandma who had dementia. I would ask her about her family but she never responded correctly.” “In last days of my father he was not able to recognise me. It was a painful experience.” “My understanding of dementia and Alzheimer's is not clear. Don't know what the differences between the two. Also, I think people are not sure of whether they actually have dementia because the symptoms are quite general.” “Mother had dementia. Did caring duties for 2 years.” “I don't personally know anyone with dementia.” “Individual cards are better - less confusing and easier to focus.” “Recall good news and good things.” “Objects from Sikh background would be really helpful.” “Seeing someone coming alive when talking about their youth.”

Black / Black British “Most people with dementia remember things that happened in the past, but less likely to remember things which are current.” “Dementia is a debilitating condition where you're left helpless and confused, frustrated. A very lonely existence, especially for the person who has it. Very often it is a very anxious time for both patient and carer.”


“I don't personally know anyone who suffers from dementia, but I do have friends whose parents are developing vascular symptoms.” “Thought that dementia was when someone drank a lot of rum and it addled the brain.” “I forget dates so use a calendar. I often put the stove on, start watching TV and my food burns.” “Whilst reminiscing, I also cry and feel so much hurt and pain.”

Mixed / Multiple “It's difficult as a carer.”

White Other (3 responses) Too many people are medicated. Focoult a sociologist discusses societal anomalies around ageing and mental health "just because it’s not normal doesn't make it wrong" and argues that there are alternatives to taking a cocktail of dopermine pills in order to age. My visits to care homes, residential and extra care schemes is littered with shells of people who are too medicated thereby whatever personality they have is lost under a drug induced haze. People at that age seem disposable. “I love singing and it really helps me clear my mind – I have Vascular Dementia and Alzheimer’s Disease and tinnitus.” “Respecting everyone.”

White English “Access to support and information etc. is not passed on from doctors or advertised enough. More awareness needed.” “My cousin has started with dementia and we tried not to make him feel bad by talking a lot about the past and reinforcing recent (short term memory) things but not over-emphasising / trying to understand how he may feel, frightened, confused - anxious.” “My father-in-law had Alzheimer's and dementia and we could have done with advice in helping him. I've recently done a Liveability Dementia Friends course.” “Very upsetting to have someone you care for no longer recognise you.” “My father has started having memory issues but is not keen on being referred to the memory service.” “Seems to affect anyone not always older people.” “It is devastating to loved ones.” “My uncle has dementia and I could not recommend enough for carers and family of people with dementia should contact dementia charities to educate themselves in order to help their loved one.


“My mother had dementia before she died and myself and family found this very difficult to cope with, especially when she stopped speaking.” “My grandma has vascular dementia. It is very upsetting to see the frustration she experiences when she doesn't know what she's doing or where she is.” “Have been through own personal breakdown, still in recovery after 6 yrs, used a method of self-holistic methods & various life coaching personal techniques inc. mindfulness, light working & more.” “I have knowledge through work.” “Haven't experienced.” “Don't have history of it in the family.” “We didn’t used to use the term “dementia”, people were just labelled as crazy and we avoided them.” “I work with many older people, quite a few with dementia. Having visual items to trigger memories sounds very useful.” “I find that when I meet people with dementia they love to talk about distant memories which is what they know - talking about current events causes confusion, loss of confidence and silence.” “The way it can aid life story work.” “I often reminisce when I am going round museums etc. or watching programmes on TV such as Antiques Roadshow or Flog when I see things/clothing etc. that were around when I was a child.” “It is important for people to be told about dementia and how reminiscence activity can help.” “I used to work for a care home chain and found reminiscence therapy rewarding for both the residents as well as staff.” “Depends on ages of family and types of resources borrowed.” “It would be good to get family round to talk rather than everyone sat in front of a TV screen.”


Memories Reminiscence Activity Library is managed by Care & Repair Leeds, a Registered Society with Charitable Status (Reg. No. 25858R). 323 Roundhay Road, Leeds, West Yorkshire, LS8 4HT. Reception: 0113 240 6009. Email: [email protected]. © Copyright Care & Repair Leeds 2015

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