The list of researchers I cite in my book on dementia

Contemporaneous peer-reviewed research, from the UK and other jurisdictions, and evidence guidelines pervade my text like letters in a stick of rock.

I am grateful for the following members of the research community who’ve made it into my book ‘Living better with dementia: good practice and innovation for the future‘, to be published in the next ten days I reckon.

Eyeballing the list, it seems as if Sube Banerjee, Jill Manthorpe and Liz Sampson are my most extensively cited authors – this does not surprise me at all, given their spectacular research output.

 

Final list

 

Aalten, P. 194

AARP 233

Aarsland, D. 325, 326

Ablitt, A. 70, 364

Abma, I. 121

Aboriginal and Torres Strait Islander Healing Foundation Development Team 64

Adams, K.B. 143

Adams, S. 107, 362

Adams, T. 131, 359

Addis, D.R. 313

Adelman, R.D. 135, 138, 144

Adelman, S. 69

Adkins, J. 372

Aguero-Torres, H. 151

Ahlskog, J.E. 38

Ahmed, S. 116, 118, 119

Ahtiluoto, S. 72

Alagiakrishnan, K. 174

Alarc.n, R.D. 86

Alaszewski, H. 281

Albert, M.S. 29, 206

Algase, D.L. 244, 246

Alisky, J.M. 323

All-Party Parliamentary Group (APPG) on Dementia 27, 28, 42, 65, 67–8, 92,

329–30

Allan, L. 180

Alred, D. 359

Alvarez, P. 307, 312

Alvaro, L.C. 276

Alzheimer Scotland 88, 89, 266

Alzheimer’s Association 45, 137

Alzheimer’s Australia 55, 92, 93, 152

Alzheimer’s Disease International 83, 92, 104, 145, 151, 173, 175

Alzheimer’s Society 42, 236

Amabile, T.M. 290

Amaducci, L. 295

American Psychiatric Association 114, 291

Amieva, H. 141

Anckaert, L. 364

Andersberg, P. 247

Anderson, A.K. 309

Anderson, D. 326

Anderson, N. 290

Andrews, S. 71

Andrieu, S. 35

Aneshensel, C. 73

Arai, A. 107

Archbold, P.G. 142

Archer, D. 203

Argyle, E. 231

Armari, E. 101

Arnheim, G. 55

Arseven, A. 115

Arthur, D.G. 244

Arto Rajala, A. 323

Ask, H. 140

Atchison, T.A. 205

Attali, E. 367

Attoe, R. 243

Audit Commission 265

Australian Department of Health 86

Australian Health Ministers’ Conference 88

Australian Institute of Health and Welfare 155

Authors undisclosed (Vanderbilt Law Review) 271

Aveling, E.L. 351

Aveyard, B. 233

Awata, S. 137

Aylward, E.H. 74

Ayres, S. 214

Azermai, M. 88, 325

 

 

Backhouse, T. 324, 327–8

Bail, M. 253

Bailey, M. 231

Baker, L.D. 372

Baker, M. 106

Baldwin, C. 243

Balint, E. 198

Ballard, C. 325, 326

Ballenger, J. 56

Balteş, F.R. 297

Bambra, C. 41, 225

Banerjee, S. 25, 30–1, 42, 69, 82, 185, 225, 321, 325, 352

Baran, M. 105

Baranowski, M. 367

Barberger-Gateau, P. 40, 171

Bardsley, M. 210

Barley, V.M. 107

Barnard, C. 58

Barnes, C. 212

Barnes, T.R. 328, 333

Barron, E.A. 114

Bartlett, F.C. 56

Bartlett, R. 57, 58, 130

Barton, A. 206

Basaglia-Pappas, S. 296

Basso, A. 295

Bastawrous, M. 137

Bates, M.S. 107

Batsch, N.L. 52, 53, 59

Battilana, J. 349

Baxter, J. 36

Bazinet, R.P. 172

BBC News 259

Beail, N. 74

Beard, R.L. 59, 294

Beattie, A.M. 103, 108

Beattie, B.L. 249

Beck, A.P. 345

Becker, D. 251

Beckman, S.L. 204

Beer, C. 352

Beerens, H.C. 151

Behuniak, S.M. 58

Benbow, S.M. 54, 66

Bender, M. 130

Benford, R.D. 56, 332

Beninger, R.J. 280

Bennett, S. 206–7, 368

Bennett, V. 244

Beresford, P. 59, 265, 269

Berkhout, A.M. 175

Bernstein, M.S. 59, 365

Berntsen, D. 312

Berrios, G.E. 103, 182

Bertram, L. 362

Best, A. 374

Bettens, K. 172

Bevan, H. 347, 352

Beydoun, H.A. 39

Beydoun, M.A. 39

Bhanji, R.A. 174

Bhattacharyya, S. 66, 101

Bickerstaffe, S. 195, 203, 209

Biessels, G.J. 35

Bigby, C. 276

Bikhchandani, S. 165

Billings, J.A. 247

Billings, P.R. 269

Binney, R.J. 307

Bisla, J. 324

Bj.rneby, S. 237

Black, S.E. 37

Blackburn, D.J. 38

Blackstock, K.L. 85

Blessed, G. 103

Blood, A.J. 295

Bo, K. 184

Boettger, S. 120

Boeve, B.F. 102, 104

Boller, F. 295

Bond, J. 32

Bonuccelli, U. 367

Borelli, P. 367

Borroni, B. 101

Boudrault, C. 172

Bourn, C. 226

Boustani, M. 70

Bower, P. 198, 199, 210

Bowling, A. 32, 141

Bowman, C.E. 276

Boyd, A. 333

Braak, E. 280

Braak, H. 280

BRACE 348

Braddock, D. 74

Bradford Dementia Group 231

Bradley, M.M. 311

Brand, M. 280

Brandon, D. 133

Braun, M. 143

Brayne, C. 82

Brearley, C. 281

Breibart, W. 120, 121

Bremberg, S. 248

Brennan, M. 73

Breteler, M.M. 39

Bridges, J. 153, 351

British Geriatrics Society 116

British Psychological Society 327, 331, 332

Britton, B. 98–9, 187

Brocklehurst, J. 182

Brodal, A. 316

Brodaty, H. 26, 102, 140, 143, 200, 326, 362

Bronfenbrenner, U. 233

Brooker, D. 231, 342

Brooks, J. 268

Brotman, S. 73

Brotons, M. 298

Brown, R. 294–5

Bruce, V. 315

Brunet, M. 28

Brunnstr.m, H. 43

Bryden, C. 17

Buchman, A.S. 39

Buck, H.G. 197

Buckwalter, K.C. 132, 325

Budrys, V. 294

Buisson, E. 149

Bujak, J.S. 205

Bunn, F. 369

Bupa 145, 151

Burant, C.J. 212

Burgener, S.C. 54

Burgess, P.W. 314

Burnham, W.H. 309

Burns, A. 26, 64, 103

Burns, L.R. 205

Burton, A.M. 315

Burton, E. 237, 238

Burton, J. 144

Busemeyer, J.R. 280

Bush, A. 74

Bush, S.H. 119

Bushe, G.R. 345, 347

Butler, M. 194

Butt, J. 64

Byrne, P. 198–9

 

 

Cabeza, R. 296, 311

Cacioppo, J.T. 141

Caddell, L.S. 55, 104, 212

Cahill, S. 253

Cai, W. 184

Caldwell, C.E. 290

Callahan, C.M. 143

Cameron, A. 203

Cameron, K. 322, 323

Camic, P.M. 299

Campbell, A. 180

Campbell, D. 100

Campbell, J.C. 131, 282

Campbell, S. 185

Campo, M. 233

Candy, B. 174

Cankurtaran, M. 370

Cannon, W.B. 309

Cant, B. 72

Cantley, C. 150

Cantor, M. 73

Capitani, E. 295

Carbonneau, H. 322

Care Commission 165–6

Care Quality Commission (CQC) 166, 210–11, 232, 232, 324

Carers Trust, Royal College of Nursing (RCN) 129, 133, 134, 144

Carey, G. 230

Caron, C. 322

Carpentier, N. 140

Carr, D. 249

Carr, S. 265

Carreon, D. 149

Carroll, G.R. 165

Carruthers, I. 33–4

Carter, A.I. 140

Casciaro, T. 349

Cass, B. 102

Cassel, E.J. 200

Casten, R.J. 64

Centre for Welfare Reform 88

Cermak, L.S. 314

Cermakova, P. 368

Chakravarty, A. 293

Challis, C. 316

Chan, K.Y. 85

Chan, S.W. 144

Chang, M. 38

Chapin, K. 298

Chappell, N.L. 138, 234

Charles, C. 200

Charon, R. 135

Charpentier, P.A. 119

Charter of Fundamental Rights of the European Union 276–7

Chassot, C.S. 359

Chaudhury, H. 233

Chaufan, C. 98

Chen, R. 226

Chen, T. 89

Cheng, A. 70

Chenoweth, B. 73

Cherry, D.L. 352

Chesbrough, H. 334

Chetty, S.K. 323

Chinthapalli, K. 267

Cholerton, B. 372

Chonchurhair, N.A. 114

Choo, W.Y. 139

Christensen, C.M. 322, 343

Christmas, M. 75

Chryssanthopoulou, C. 66

Chung, J.C. 87

Chung, L.C. 144

Clancy, D. 231

Clare, L. 55, 104, 130, 211, 212, 276

Clark, C.N. 297

Clark, H. 267

Clark, R. 361

Clark, V.P. 315

Clarke, A. 151, 197

Clarkson, P. 180

Clayman, M.L. 135

CLBC 274

Clegg, A. 116

Clemerson, G. 102, 105–6

Clore, G.L. 309

Coetzer, G.H. 345

Cohen, C.A. 13

Cohen, C.A. 139

Cohen, D. 18

Cohen, E. 237

Cohen-Eliya, M. 251

Cohen-Mansfield, J. 55, 324, 330

Cohen, M.E. 243

Cohen, N.J. 307

Cohen, S. 132, 139

Coile, R.C. 204

Cole, L. 180, 185

College of Occupational

Therapists 253

Collins, C. 194

Collins, P.A. 226

Combes, H. 72

Commonwealth Fund 88

Commonwealth of Australia 93

Conklin, J. 351

Conner, M. 350

Connolly, S. 87

Conservative Party 22

Conway, M.A. 312, 313, 314

Cook, C. 174

Cooke, H.A. 232, 234

Cooley, S.J. 247

Cools, H.J. 175

Coons, H.L. 202

Cooper, C. 70, 71, 72

Coppola, G. 172

Coriell, M. 132

Corneg.-Blokland, E. 325, 326

Corrigan, P.W. 54

Corsonello, A. 328

Cortes-Blanco, A. 372

Cottrell, V. 51, 58

Covinsky, K.E. 181

Craft, S. 170, 372

Craig, C. 289

Crammond, B. 230

Cranswick, K. 137

Crawley, H. 164, 169, 175

Creese, B. 325, 326

Crespy, D.A. 205

Cronin-Stubbs, D. 206

Croom, B. 142

Crossley, M.L. 324

Crossley, N. 324

Croucher, K. 231

Crutch, S.J. 291, 291–2

Cummings, J.L. 82, 140, 167,

292

Cunningham, C. 122

Cunningham, E.L. 31, 32

Cunningham, H. 75

Curb, J.D. 69

Currie, G. 351

Cushman, L.A. 245

Cutcliffe, J. 367

 

 

Dagerman, K. 325

Dahlgren, G 228, 229

Dalton, A. 75

Dalton, J.M. 136

Damiani, G. 368

Dasgupta, M. 114

Dauphinot, V. 138

Davies, N. 361

Davies, P. 114

Davies, S. 131

Davies, S.L. 149

Daviglus, M.L. 35

Davis, D.H. 120, 122

Davis, G.F. 165

Davis, R. 199

Davis, S. 149

Day, A. 64

Day, A.M. 367

Day, K. 149

de Ajuriaguerra, J. 291

De Bellis, A. 248

De Boer, M.E. 276

De Civita, M. 135

de Haes, H. 200

De Lepeleire, J. 27, 214

De Martino, B. 309

de Medeiros, K. 233

De Meyer, A. 205

De Rosa, E. 309

de Vugt, M.E. 130, 142, 143, 327

Defanti, C.A. 249

Degner, L.F. 352

Delancey, J.O.L. 184

Delany, N. 108

Delazer, M. 280

Delgado, M.R. 311

Deloitte 210, 334

Dementia Action Alliance (DAA) 30, 146–7, 147–8, 332–3, 333

Dementia Alliance International (DAI) 58–9, 364

Dementia Services Development Centre 234

Dementia UK 66

Department of Health 29–30, 31, 34, 65, 66, 68, 69, 72, 74, 101, 117, 149, 150, 179, 188, 199, 200, 202, 203, 207, 209, 210, 214, 215, 216, 237, 264, 265, 266, 281, 281–2, 325, 345, 368

DeRienzis, D. 103

Desmond, D.W. 38

Desrosiers, J. 322

Devi, G. 37

Devine, M. 185

Devore, E.E. 40

Dewing, J. 144, 244, 250–1

Diabetes UK 217

DiClemente, C.C. 346

Diderichsen, F. 226

Dike, C.C. 367

Dillane, J. 182

DiNatale, Johnson, B. 185

Dingjan, P. 243

Dixon-Fyle, S. 195

DNA Web Team 276

Dobkin, P.L. 135

Dodd, K. 75

Dodds, P. 245

Dolan, J. 357

Donelan, K. 138

Donkin, M. 102, 362

Donnelly, M. 249

Doran, T. 121

Dosman, D. 137

Dougherty, T.-M.P. 334

Downs, M. 27, 180

Doyle, P.J. 233

Drance, E. 132

Draper, B. 351–2

Drennan, G. 359

Drennan, V.M. 180, 185, 186

Drentea, P. 139

Dr.es, R.-M. 276

Duarte, N.T. 334

DuBeau, C.E. 184, 188

Dubet, F. 140

DuBois, B. 243

Ducharme, F. 361

Duchen, L.W. 167

Duffy, C.J. 245

Duffy, S. 258

Dunlap, S. 204

Dupuis, S.L. 132

Dutton, R. 231

 

 

Ebersbach, G. 293

EClipSE 37

Edquist, C. 323

Edvardsson, D. 87, 130, 152, 197

Edward, H.G. 174

Edwards, A.B. 137

Eeles, E. 113–14, 119

Eidelman, S. 72

Ekelund, P. 179

Ekman, P. 297

El-Murad, J. 290

Ellis, K. 267

Ellis, R.P. 89

Eltis, K. 246, 251

Embrett, M.G. 230

Emilsson, U.M. 89

Engel, S.A. 199, 200

Ennis, E.M. 197

Equality and Human Rights

Commission 252, 259

Ericsson, I. 233

Eriksson, S. 205–6

Estabrook, C.A. 352

EU ‘Rhapsody Project’ 108

Eustace, A. 142

Evandrou, M. 65

Evans, S. 237

 

 

Fainstein, C. 187

Fairburn, C.G. 168

Fairman, S. 347, 352

Farah, M.J. 315

F.art, C. 171

Feightner, J. 37

Feinberg, L.F. 251

Ferraro, F.R. 85

Ferreira, M. 372

Ferri, C.P. 86

Fetherstonhaugh, D. 87

Fick, D.M. 123

Field, E.M. 141

Finkel, S. 326

Firth, L. 136

Fisk, J.D. 249

Fitch, W.T. 289

Flatley, M. 153

Fletcher, P.D. 297

Foebel, A.D. 326

Folkman, S. 70

Follett, M.P. 346

Fong, T.G. 118

Forder, J. 264

Forstelund, L. 331

Fortinsky, R.H. 212

Fossey, J. 106, 149, 331

Foster, D.P. 107

Fox, N.C. 81

Fozard, J.L. 247

Francisco, A. 64

Fratiglioni, L. 371

Frawley, P. 276

Freeth, S. 102

French, J. 58

Freyne, A. 107

Fried, L.P. 181

Friedson, E. 199

Friesen, W.V. 297

Füller, J. 18

Furst, M. 108

 

G8 Summit Declaration 321–2

Gabbay, J. 188

Gabrieli, J.D. 309

Gafni, A. 200

Gamsu, D.S. 107

Ganz, M. 332, 346, 348

Gao, S. 37

Garand, L. 52

Gardener, S. 171

Gardiner, P. 131

Gastmans, C. 277, 364

Gaugler, J.E. 137

Gauthier, I. 315

Gauthier, S. 29

Gawande, A. 370

Genomic Data Sharing 100

George, D.R. 56

George, L.K. 199

Giannakouris, K. 137

Giblin, F.J. 270

Gibson, C. 121

Gibson, F. 282

Gibson, G.D. 70

Giebel, C.M. 82

Gill, D. 113

Gilleard, C. 88

Gillette-Guyonnet, S. 35

Gilmour, H. 282

Girard, T.D. 120

Gitlin, L.N. 237

Gladwell, M. 204

Glasby, J. 267

Glassman, R.N. 18

Gleckman, H. 99

Gleicher, D. 230

Gleichgerrcht, E. 278, 279

Glendinning, C. 267, 268, 269

Glover, J.C. 244

Glymour, M.M. 226

Godden, S. 150

Goffman, E. 52, 54, 56, 130, 197, 360

Goh, A.M. 269, 270

Golander, H. 55

Goldacre, M.J. 369

Goldacre, R. 369

Goldberg, D. 74

Goldman, J.S. 363

Goldsilver, P.M. 322

Golics, C.J. 361

Goodchild, C. 268

Goodman, C. 149, 350–1

Goodson, J.R. 334

Goodwin, N. 202, 207, 208

Gordon, N. 291

Gore, R.L. 122

Gorno-Tempini, M.L. 168

Gort, A.M. 138

Graham, K.S. 313

Grant, G. 131

Grant, R.L. 206

Grassi, E. 295

Green, D. 281

Green, R.C. 56

Green, S. 53, 54

Greenberg, D.L. 312

Greene, J.D. 315

Greene, M.G. 135

Greenhalgh, T. 322, 344

Greenwood, N. 137, 364

Gregory, C. 342

Grenier, A. 140

Greve, H.R. 165

Gridley, K. 268

Griffith, E.E.H. 367

Griffith, R. 262

Griffiths, P. 368

Grimley Evans, J. 248

Gruneir, A. 329

Gruneir, M.R. 322

Guan, J.-Z. 172

Guardian website 375

Gu.tin, S. 298

Gupta, A.K. 335

Gustafson, D.R. 39

 

 

Ha, J. 280

Haase, H. 41

Habell, M. 259

Hachinski, V. 72

H.gglund, D. 180, 184

Hahn, C. 352

Hailstone, J.C. 297

Hall, G.R. 132, 325

Hall, N.M. 312

Hall, R.J. 113

Hallberg, I.R. 90

Hampton, A.N. 280

Hancock, G.A. 188

Hannah, M.T. 165

Hansen, M.T. 204

Hanson, E.J. 151

Haque, S. 313

Haralambous, B. 71

Harari, D. 188

Harding, R. 139, 140

Harris, L.F. 64

Harris, M. 202

Harris, P.G. 104

Hart, V. 265

Harvey, R.J. 108

Hasegawa, J. 180

Hasselkus, B.R. 367

Hauser, R.M. 249

Hawkins, R.L. 142

Hawkley, J.C. 141

Haxby, J.V. 315

Haycox, A. 99

Hayes, M.V. 226

Health Foundation 129, 150,

153, 154, 210, 264, 265

Heath, I. 358

Heaven, A. 120

H.bert, R. 38

Hecaen, H. 291

Heggestad, A.K. 277

Hein, C. 115, 120

Heller, L. 18, 81, 214

Heller, T. 18, 81, 214

Hellstr.m, I. 233

Helvik, A.S. 205, 368, 369

Henderson, V.W. 245

Hendrie, H.C. 85

Hennessy, S. 328

Henry, W.D. 116

Herman, P.M. 195

Hermans, D.G. 247, 248

Heru, A.M. 143

Hewer, R.L. 138

Heywood, F. 237

Hick, R. 74

Higgins, D. 227

Higgs, P. 88

Hilgeman, M.M. 142

Hillier, L.M. 114

Hinchliffe, A.C. 129

Hirasawa, Y. 181

Hirsch, M.A. 136

Hirsh, D. 187

Hirshleifer, D. 165

Hirstein, W. 290, 291

HM Government 68, 87

Hobfauer, R.K. 206

Hocking, E. 164, 169, 175

Hodges, J.R. 314, 315

Hoe, J. 351

Hofman, A. 39

Holford, P. 172

Holland, A.C. 279, 297, 313

Holland, A.J. 74

Holland, W. 26

Hollander, D. 358

Hollander, M.J. 138

Holman, C. 350–1

Holman, H. 212

Holmes, J.D. 114

H.ltt., E.H. 115

Hoof, J. 231

Hope, K.W. 144

Hope, R.A. 168

Hope, T. 168, 250, 252

Hopkins, R.O. 312

Horimoto, Y. 180

Horizon Scanning Centre 101

House, A.O. 114

House of Lords 247, 262

Housing Learning and Improvement Network 234, 235, 236, 237

Houwelingen, H.C. 175

Hovens, I.B. 122

Hsieh, S. 296, 362

Hsu, M. 280

Htay, U.H. 247

Huang, H.L. 142

Huang, T.L. 172

Hubbard, R. 73

Hudson, D.L. 243

Hughes, B. 103

Hughes, J.C. 243, 244, 246, 253

Hughes, T.F. 171

Hulko, W. 57

Humphrey, K. 315

Hunter, P.V. 365

Hunter, R. 153

Huppert, F.A. 359

Hurley, A.C. 245

Hussein, S. 54

Hutchins, R.M. 246

Hutchinson, N. 74

Huybrechts, K.F. 329

Hynan, L.S. 40

 

 

Ibarra, H. 204

Iemmi, V. 92

Igbedioh, C. 188

Iguchi, A. 180

Ikeda, M. 167, 168

Ikegami, N. 131

Ilies, R. 343

Iliffe, S. 26, 54, 72, 180, 185,

193, 197, 322, 344, 363

Iltanen-T.hk.vuori, S. 185

Imtiaz, B. 37, 372

Independent Commission

for Whole Person Care

(ICWPC) 203, 205

Innes, A. 32, 82, 92, 128, 154,

253

Innovations in Dementia 72

Inoue, K. 169

Inouye, S.K. 115, 115, 119

Insel, N. 309

Insel, P. 325

Ionicioiu, I. 28

Iqbal, A. 143

Iris, M. 68–9, 70

Irish, M. 314

Isaac, C. 102, 105–6

Isaacs, R. 291–2

Isern, J. 345

 

 

Jack, R. 133

Jacobs, S. 267

Jacobs, W.J. 245

Jacome, D.E. 297

Jaglal, S. 139

James, I.A. 367

James, M. 315

James, W. 309

Janata, P. 296

Janicki, M.P. 74, 75

Jansen, K.J. 346

Jansen, S.J.T. 201

Jan.en, C. 230

Jarmolowicz, A. 101

Jasinarachchi, K. 150

Jenewein, J. 120

Jenkins, C. 366

Jenkins, C.R. 33

Jirovec, M.M. 182

Johannessen, A. 106, 106–7

Johansson, L. 38

Johl, N. 70

Johnson, E.J. 18

Johnston, R.A. 315

Joling, K.J. 361, 362

Jolley, D. 37

Jones, A. 107

Jones, G.M.M. 306

Jones, G.V. 70, 364

Jones, L. 174

Jones, R.N. 226

Jones, R.W. 211

Jong-Wook, L. 227

Joosten, L. 366

Jorm, A.F. 37

Josefowitz, N. 58

Joseph Rowntree Foundation 150, 370, 372

Josephs, K.A. 102, 104

Josephson, B.R. 295

Judge, T.A. 343

 

 

Kahana, Z. 251

Kaiser, S. 108

Kalaria, R.N. 39, 92, 121

Kalsy-Lillico, S. 74

Kammer, S. 298, 299

Kapur, N. 293

Kar, N. 66, 326

Karnieli-Miller, O. 72

Katz, M.L. 204

Kaufman, G. 290

Kaufmann, E.G. 199, 200

Kawamura, K. 247

Kay, D.W. 107

Kazer, M.W. 197

Keady, J. 104, 108, 135, 151, 233

Kearney, M. 196

Kearns, W.D. 247

Keast, R. 230

Keenan, T.D. 369

Keene, J. 168

Kehne, J.H. 39

Kellaher, L. 174

Kelleher, D. 107

Keller, H.H. 174

Keller, L.J. 173

Kellett, U. 87

Kelley, B.J. 102, 104

Kelley, W.M. 315

Kelly, J.F. 202

Kemshall, H. 281

Kendrick, M.J. 274

Kensinger, E.A. 279, 297, 313

Kercher, K. 212

Kerr, D. 75

Kertesz, A. 291

Keyes, C.L.M. 359

Keyes, S.E. 364

Khachaturian, Z.S. 34, 372

Khalfa, S. 297

Kibayashi, K. 245

Kickbusch, I. 230

Kiecolt-Glaser, J.K. 143

Killaspy, H. 360

Killick, J. 289

Kim, D.H. 370

Kim, J.W. 39

King, M. 73

King, N. 290

King’s Fund 216

Kingston, P. 101

Kinney, J.M. 129

Kirk, A. 291

Kirk, L.J. 74

Kirkevold, M. 365

Kitwood, T. 57, 58, 130, 151, 211, 324, 364, 365

Kivipelto, M. 39

Kjellstrom, S. 233

Kloeters, S. 279

Kmietowicz, Z. 27

Knapp, M. 66, 92

Knauss, J. 59

Knight, A. 227, 228

Knight, B.G. 70

Knocker, S. 73

Koch, T. 26, 54, 72, 197, 322

Koehn, S.D. 132

Koester, R. 244

Koger, S.M. 298

K.hler, L. 137, 141

Kolanowski, A.M. 132

Kopelman, P.G. 39

Korczyn, A.D. 103

Kort, H.S.M. 231

Kotter, J.P. 348, 349

Kovach, C.R. 132

Kowalski, C. 230

Kozak, J.-F. 132

Kozin, M. 294

KPMG 208

Kramer, M.W. 205

Kratzer, J. 334

Krieger, J. 227

Krishnamoorthy, A. 326

Krishnamoorthy, E.K. 82

Kristensen, S.R. 117

Kroenke, K. 206

Kroll, N.E. 307

Krull, A.C. 69

Kulik, J. 294–5

Kümpers, S. 89

Kurian, M. 174

Kuruppu, D.K. 102

Kuzuya, M. 180

 

 

La Fontaine 72

La Placa, V. 227, 228

LaBar, K.S. 296, 311

Labudda, K. 280

Laeng, B. 292

Lai, C.K.Y. 244

Lai, F. 75

Laing, W. 149

Lakey, B. 139

Lalonde, M. 228, 228

Lambert, A. 72, 315

Lancet Global Mental Health

Group 359

Landau, R. 248, 249, 251

Lane, H.P. 55

Lane, L. 195

Lapane, K.L. 329

Laraway, A. 74

Larsson, M. 316

Lauque, S. 173

Laurila, J.V. 115

Lautenschlager, N.T. 37

Lautrette, A. 249

Law, K. 359

Lawley, D. 113, 115, 116, 333

Lawrence, V. 70

Lawton, M.P. 226, 245–6

Lazarus, R.S. 70

Leary, A. 368

LeDoux, J.E. 316

LeDuc, L. 139

Leech, D. 344

Legh-Smith, J. 138

Leibing, A. 371

Leonard, B.E. 39

Leonard, M. 115, 116

Leppert, J. 180

Letter to the Prime Minister 42

Leung, F.W. 185, 187

Leurent, B. 116, 118, 119

Levenson, R. 297

Levine, B. 296, 314

Lewin, S.A. 130

Lewis, G.H. 228, 229

Liberzon, I. 315

Lieb, W. 40

Lievesley, N. 64, 66

Ligthart, S.A. 35

Limb, M. 267, 268

Lin, F.R. 206

Lin, L.C. 175

Lin, N. 350

Lincoln, P. 35

Lindsay, J. 38

Lingler, J.H. 136

Link, B.G. 52

Linsk, N.L. 200

Liperoti, R. 326, 328

Litch, B.K. 204

Littlechild, R. 267

Liu, G. 138

Liu, H.Y. 143

Liu, S. 226

Livingston, G. 66, 70

Lloyd, B.T. 140

Locadia, M. 201

Lockeridge, S. 107

Logsdon, R.G. 244

Loiselle, L. 132

Long, B. 198–9

Lopez, O.L. 142

Lorig, K.R. 212

Louw, S.J. 244, 246, 253

L.vd.n, M. 371

Loveday, B. 342

Low, L.F. 68

Lucas, C. 237

Lucas, J.A. 328

Lucas, M. 180

Lupton, D. 27

Luscombe, C.E. 89

Luscombe, G. 102, 103–4

Lussier, M. 181

Lutz, C.J. 139

Lyketsos, C.G. 140

Lyman, K.A. 32

Lynn, M.R. 33

Lyons, K. 143

 

 

Ma, D.W.L. 172

McCabe, L.F. 86

McCabe, M.P. 136

McCarthy, R.A. 315

McCormack, B. 87, 130, 197

McCosh, L. 180

McCoy, D. 150

McCrae, N. 352

McCullagh, C.D. 37

McDaniel, A.H. 170

McDonald, A. 272, 274

McDonald, R. 117, 120, 121

Mace, N. 180

McEwen, M. 197

McGettrick, G. 275

McGuinness, B. 82

Mack, W. 245

McKee, K. 133

McKee, M. 268–9

McKenna, B. 359

McKeown, J. 151

McKhann, G.M. 29

McKinnon, M.C. 296

McKinsey Centre for Business Technology 100

McLachlan, S. 55

McLaren, S. 231

MacLean, P.D. 316

MacLullich, A.M. 113, 121

Macmillan 144

McNess, G. 105

Macovei, M. 261

McShane, R. 244, 252

Magaki, S. 368

Magnus, R. 292

Maguire, E.A. 313

Mahieu, L. 364

Mahoney, D.F. 70

Mahoney, E.K. 245

Mainsbridge, A. 269

Maisog, J.M. 315

Malmberg, B. 186

Malnutrition Task Force 166–7

Mandell, A.M. 56

Manderson, B. 208

Mandler, G. 314, 316

Manes, F. 278

Mangialasche, F. 85, 366

Manly, J.J. 85

Mann, A.M. 116

Mann, D.M. 103

Manns, J.R. 312

Manthorpe, J. 32, 54, 73, 82, 92, 105, 106, 173, 193, 211, 232, 247, 281, 344, 363

Marcantonio, E.R. 116, 121

Marcusson, J. 140

Marino, C.K. 359

Markowitsch, H.J. 280, 316, 317

Markus, H.S. 100

Marmot, M. 227, 228, 229

Marquardt, G. 234, 235

Marr, D. 292, 313

Marshak, R.J. 347

Marshall, M. 149

Marslen-Wilson, W.D. 315

Martens, M.A. 297

Martin, C. 154

Martin, F. 197, 211, 213

Martin, M. 143

Martire, L.M. 142

Masaki, K.H. 69

Masi, C.M. 34

Mason, M. 236

Mather, L. 211

Matrix Evidence 331

Matsuzawa, T. 289

Matthews, B.R. 102

Matthews, F.E. 56, 82

Maurer, K. 142

M.vall, L. 186

Maxwell, J. 196, 196

Mayou, R. 113

Mayrhofer, A. 350–1

Mead, N. 198, 199, 210

Meagher, D. 115, 116

Means, R. 237

Medeiros de A Nunes, V. 149

Meeks, S. 359

Meeten, F. 299

Meeter, M. 312

Melkas, S. 122

Meltzer, D.O. 100

Mendes, F. 359

Mendez, M. 104

Mennell, S. 167

Mental Welfare Commission for

Scotland 261

Meri Yaadai Dementia Team 71

Merks-Van Brunschot, I. 207, 208

Meyer, J. 153

Meyer, L.B. 297

Meyerson, D.E. 347–8

Mgekn, I. 172

Michelfelder, I. 334

Milano, W. 169

Miles, S. 248

Miley, K.K. 243

Miller, B.L. 293

Mills, J.K. 118

Milne, A. 27, 66, 71

Milne, H. 247

Milner, B. 308, 312

Milton, J. 367

Minhas, J.S. 118

Mirra, S.S. 372

Miskelly, F. 247, 248

Mitchell, G. 367

Mitchell, L. 237, 238

Mithen, S.J. 297

Mitka, M. 326

Mittelman, M. 52, 53, 59

Mohamed, S. 137

Moise, P. 134

Molinari, V. 244

M.ller, A. 106, 106–7

Monastero, R. 41

Moniz Cook, E. 211, 214

Montgomery, P. 245, 249

Moon, H. 143

Moore, K.H. 184

Moore, W.R. 73

Moorman, S.M. 249

Morandi, A. 116, 119, 120,

122–3

Morgan, D.G. 120

Morgan, E. 113, 119

Morgan, S. 370

Moriarty, J. 68, 73

Moroney, J.T. 38

Morris, B.W. 203

Morris, C.H. 168

Morris, J.C. 29

Morriss-Kay, G.M. 290

Moscovitch, M. 307

Moss, S. 74

Mount, B. 196, 298

Mountain, G.A. 211

Moyer, D. 59

Moyle, W. 82, 90

Muers, J. 70, 364

Mukadam, N. 70, 85

Mukaetova-Ladinska, E.B. 121

Mulley, A. 200

Mulley, G. 206

Mummery, C.J. 168

Munro, S. 298

Murcott, A. 167

Murman, D.L. 327

Murray, J.A. 18

Musher, D. 187

Myferi Williams, C. 299

Nadel, L. 245, 307

N.den, D. 247

Nadler, A. 54

Nakanishi, M. 90, 93

Nakashima, T. 90, 93

Namazi, K.H. 185

 

Narayan, S. 143

National Audit Office 27, 66, 117

National Council for Palliative Care 149

National Housing Federation 234, 235, 235–6

National Institute for Health and Care Excellence (NICE) 81, 114, 116, 119– 20, 166, 217, 325, 326

National Institute for Health Research 101

National Institute for Mental Health 324

National Institute for Mental Health in England (NIMHE) 345

Nauta, W.J.H. 316

Nay, R. 87

Naylor, M.D. 91

Neary, D. 314

Neary, S.R. 70

Neilsen, E. 345

Nelson, C.A. 315

Nelson, R.R. 334

Neundorfer, M.M. 139

Newbronner, L. 145, 268

Newens, A.J. 107

Ngandu, T. 37, 39

NHS Confederation 29, 266, 268

NHS End of Life Care Programme 149

NHS England 117, 117–18

NHS Institute for Innovation and Improvement 30, 331, 332–3, 333

NHS Leadership Academy 343

Nickerson, R.S. 290

Nielsen, S.L. 309

Nielsen, T.R. 65

Nieuwenhuis, I.L. 313, 314

Nilstun, T. 248

Nobili, A. 154

Nogawa, H. 298

Nolan, M.R. 108, 130, 131, 135, 233

Nordenfelt, L. 277

Norton, S. 35, 82, 371

Nortvedt, P. 277

Nourhashemi, F. 154

Nuffield Council on Bioethics 250, 251, 277

Nuffield Trust 208, 210, 264

 

Obert, S. 345

Oboh, L. 334

Ochsner, K.N. 296

O’Connell, C.M. 70

O’Connor, D.O. 57, 58

O’Doherty, J.P. 280

O’Donnell, B.F. 188

O’Driscoll, A. 18

O’Dwyer, C. 87, 88

O’Hanlon, S. 114, 122, 333

Ohman, A. 309

O’Keefe, J. 245

O’Keeffe, S.T. 113, 114

Olafsd.ttir, M. 140

Oldman, C. 237

Oliver, M. 87

Olsson, H. 180

O’Malley, G. 121

O’Malley, L. 231

Omar, R. 296, 297

O’Neill, D.J. 253

O’Neill, K. 322, 323

Ormel, J. 206

Orrell, M.W. 141, 185, 188

Ortony, A. 309

Osborne, H. 365–6

Ouslander, J. 183, 187

Oveisgharan, S. 72

 

 

Pai, M.C. 245

Pak-Hin Kong, A. 323

Paller, K.A. 315–16

Palmer, J.L. 151

Panegyres, P.K. 101, 108

Panksepp, J. 294

Panza, F. 39

Pari, G. 280

Park, N.S. 359

Parker, K. 248

Parkinson, R. 183

Parmar, J. 140

Parsons, T. 199

Partanen, J. 323

Partridge, J.S. 115

Passini, R. 245

Passmore, A.P. 31, 32

Patel, P. 74

Paton, J. 73

Patterson, C. 37

Patterson, T. 70

Peacock, S. 211

Pearlin, L.I. 137

Pearson, L. 70

Pedone, C. 328

Peel, E. 139, 140

Peisah, C. 200

Peralin, L.I. 70

Perera, G. 115

Perretta, J.G. 280

Perry, R.J. 362

Persson, G. 114

Pertez, I. 297

Peters, R. 38

Petersen, G. 249

Petersen, K.A. 247

Petersen, R.C. 81

Peterson, C. 359

Petrea, I. 82, 83, 83–4, 91, 92,

94

Phelan, J.C. 52

Phelps, E.A. 309, 311, 312

Phil, R. 107

Philip, J. 55

Phillips, M.L. 310, 310

Phillipson, L. 54

Piccolo, R.F. 343

Piefke, M. 312

Pieisah, C. 324

Piercy, M. 291

Pike, K.E. 372

Pimlott, N.J.G. 140

Pinkston, E.M. 200

Piquet, O. 169

Platzer, H. 73

Pleydell-Pearce, C.W. 314

Ploeg, J. 352

Poggesi, A. 187

Poletti, M. 367

Policy Research Unit in

Commissioning and the

Healthcare System 264

Poline, J.B. 203

Pollock, A. 150

Polos, L. 165

Pons-Vigu.s, M. 230

Porat, I. 251

Pot, A.M. 82, 83, 83–4, 91,

92, 94

Powell, P.H. 184

Power, A. 274

Prasad, A.S. 41

Premi, E. 101

Price, B.H. 278

Price, E. 73

Price, J.D. 248

Prince, M.J. 66, 69, 81, 82, 86

Pringle, D. 139

Pritchard, J. 281

Prochaska, J.O. 346

Public Enquiry Unit 215–16

Public Health England 34, 38

Pulsford, D. 324

Pung, C. 345

Pusey, H. 153, 214

PwC 203

Pynoos, J. 237

 

 

Quadrio, C. 200

Quaid, K.A. 363

Quin, R. 211

Quinn, C. 130, 144

Quinn, R. 172

Qureshi, H. 133

 

Rabins, P. 180

Radley, A. 107

Rafferty, J. 154

Rahman, S. 17, 18, 20, 34, 55, 63, 88, 100, 155, 185, 195, 214, 236, 261, 277, 278, 279, 279, 370

Rai, J. 183

Raj, S.P. 335

Ramachandran, V.S. 290, 291

Randall, G.E. 230

Rankin-Hill, L. 107

Rankin, K.P. 292

Ransmayr, G.N. 186

Rao, H. 165

Rapaport, J. 276

Rapoff, M.A. 135

Rascovsky, K. 167

Ratnavalli, E. 100

Raven, B. 58

Ray, S. 165

Ray, W.A. 328

Ready, D.A. 347

Redman, R.W. 33

Reed, D.R. 170

Reese, S.D. 56

Reid, C. 232, 234

Reid, R.C. 234

Reinhardt, J.P. 361

Reinken, J. 180

Rempel-Clower, N.L. 311

Repper, J. 151

Resnick, N.M. 182, 183

Reutens, D.C. 297

Reynolds, D. 54

Ribot, T. 310–11, 312

Richard, E. 366

Richards, D. 214

Richards, M. 72

Richardson, T.J. 138, 143

Richter, T. 326, 331

Riegel, B. 135

Ringman, J.M. 172

Rink, L. 41

Rioux, M.H. 19

Ritchie, C.W. 36

Ritchie, K. 36

Riva, G. 259

Robert, P. 26

Roberts, C. 136

Robertson, J. 106

Robinson, C.A. 232, 234

Robinson, J. 68

Robinson, L. 247, 253, 322

Robotham, S.L. 118

Rockwood, K. 38, 114

Rogers, J. 266

Rohrer, J.D. 297

Roland, M. 121

Rolland, Y. 244

Romeo, R. 92

Roozendaal, M. 207

Rose, P. 73

Rosen, H.J. 168

Rosenbloom, M.H. 278

Rosenheck, R.A. 328

Rosenvinge, H. 108

Roses, A.D. 358

Ross, H. 151

Rossington, J. 73

Rossor, M.N. 102, 104, 291, 291–2

Roth, M. 103

Rovner, B.W. 64

Rowe, M.A. 244

Rowlands, J.M. 211

Royal College of General Practitioners 214, 215

Royal College of Nursing (RCN) 152

Royal College of Physicians 214

Royal College of Psychiatrists 207, 209

Royal Commission on Long Term Care 231

Royal Pharmaceutical Society 332–3

Rozario, P.A. 103

Rubin, D.C. 294, 312

Rundgren, A. 179

Runnymede Centre for Policy on Ageing 64

Rusanen, M. 39

Ryan, C.E. 143

Ryan, T. 131

Ryff, C.D. 359

 

 

Sachdev, P.S. 64

Sacks, O. 297

Saczynski, J.S. 115

Sahlas, D.J. 293

Sakakibara, R. 182, 183, 186

Sakamoto, R. 122

Salem, L.C. 358

Salimpoor, V.N. 297

Salovey, P. 295

Sampson, E.L. 102, 104, 116, 117, 118, 119, 174, 322, 361

Samsi, K. 232

Sandman, P.O. 130, 152, 197

Sapolsky, R.M. 39

Sarason, I.G. 309

Saunders, A.M. 358

Saunders, P.A. 233

Sauter, S. 230

Saxena, S. 113, 115, 116

Scarmeas, N. 40, 171

Schalk, R. 207

Schein, E.H. 164, 345

Schermer, M. 367

Schleimer, S.C. 335

Schmahmann, J.D. 278

Schmidt, K.L. 136

Schmieg, P. 234, 235

Schmitz, T.W. 309

Schneider, L. 325

Schnelle, J.F. 182, 185, 187

Schofield, P. 269

Schrank, B. 360

Schrauf, R.W. 68–9, 70

Schultz, M. 197

Schulz, R. 51, 58, 136, 139, 142

Schumacher, K.L. 142

Schur, H.V. 107

Schwabenland, C. 19

Schwarzinger, M. 134

Scott, C.J. 206

Scottish Dementia Champions

Managed Knowledge Network 351

Scottish Development Centre for Mental Health 289–90

Scottish Government 91, 272, 272–3, 273–4, 289–90

Scoville, W.B. 308

Sculman, A.D. 335

Seabrooke, B. 71

Seelaar, H. 101

Seeley, W.W. 289

Senge, P. 165

Serino, S. 259

Setterlund, J. 370

Shaji, K.S. 129

Shallice, T. 314

Shany-Ur, T. 57

Sharif, N. 68

Sharot, T. 311

Shastry, B.S. 270

Sheehan, B. 237, 238

Sheline, Y.I. 372

Shen, L. 363

Shi, Y. 227

Shimizu, K. 247

Shinoda-Tagawa, T. 244

Shippy, A. 73

Shmotkin, D. 360

Shojo, H. 245

Shyu, Y.I. 143

Siddiqi, N. 114

Signoret, J.L. 295

Silkinson, J. 252

Silva, S.A. 130

Silverstone, F.A. 206

Simon, F. 245–6

Simpson, J. 107, 365–6

Sinclair, A.J. 216–17, 369

Singer, B. 359

Singer, J.A. 295

Singh, P. 365

Sinz, H. 280

Skevington, S.M. 211

Skills for Care/Skills for Health 217

Skladzien, E. 324

Skoog, I. 39, 114, 140

Slasberg, C. 269

Sleegers, K. 172

Slettb., A. 277

Slooter, A.J. 362

Smebye, K.L. 365

Smith, S.J. 297

Smith, T. 369

Smyth, K.A. 139

Smythe, A. 344

Snow, D.A. 56, 332

Snyder, A.W. 291, 293

Snyder, L. 366

So, T.T. 359

Soares, J.J. 309

Social Care Institute for Excellence (SCIE) 174, 260, 276

Sofi, F. 38

Sontag, S. 55

Soto, M.E. 372

Soyinka, A. 333

Spencer, B. 73

Sperling, R.A. 36

Sperlinger, D. 108

Spilsbury, K. 212

Sporting Memories Network 307

Spreng, R.N. 101

Squire, L.R. 307, 312

Srivastva, S. 345

Stanley, N. 233

Starbuck, W.H. 351

Stechl, E. 199–200

Steel, A. 82, 90

Stein, K. 245

Stein-Shvachman, I. 103

Stephens, M.A.P. 129

Stern, Y. 18, 37, 118

Stevens, A. 188

Stewart, B.J. 142

Stewart, J. 226

Stewart, R. 115

Stirling, C. 140

Stokes, C. 72

Stokes, G. 365–6

Stokes, L.A. 72

Stooksbury, D. 244

Stott, N. 199

Stout, J.C. 280

Strachan, P.H. 135

Strategy& 202, 208

Straus, S.M. 328

Stuckey, J.C. 139

Stump, C. 149

Sturmberg, J. 154

Sugarman, J. 249

Sullivan, K.A. 361

Sullivan, L. 274

Sung, H.C. 183

Sutton, M. 117

Svoboda, E. 296

Swaffer, K. 104–5, 136–7, 259, 260, 360

Szasz, T.S. 358

Szewczyk, B. 41

 

 

Tabet, N. 172

Tahir, T.A. 113, 119

Takahata, K. 291, 292

Takashima, A. 313, 314

Takehara-Nishiuchi, K. 309

Taket, A. 72

Tan, D. 181, 183

Tanaka, H. 298

Tanaka, Y. 298

Tanenbaum, S.J. 129

Tangney, C.C. 171

Tariot, P.N. 372

Tascone, L.S. 368

Tateno, A. 372

Taylor, N.S.D. 265

Taylor, S.E. 107

Teece, D.J. 323

10/66 Dementia Research Group 86

Teri, L. 182

Teuber, H.L. 315

The, A.-M. 276

The Princess Royal Trust for Carers 134

Thomas, A.J. 206–7, 368

Thomas, B. 227

Thompson, C.A. 212

Thompson, G.N. 352

Thompson, P.M. 366

Thompson, R. 324, 351

Thompson, R.G. 296

Thompson Coon, J. 327

Thomson, H. 226

Tilse, C. 370

Tilvis, R.S. 188

Timmins, N. 352

Timpson, T. 322

Tindall, L. 105, 106

Tingle, J. 262

Tischler, V. 33

Tobin, S.S. 365

Todd, R.M. 307

Tolbert, P.S. 165

Tolhurst, E. 101

Tomlinson, B.E. 103

Tomlinson, F. 19

Toot, S. 181, 185

Tooth, L. 129

Topo, P. 185, 298

Torres, A. 18

Tranv.g, O. 247

Traynor, V. 144

Tremblay, A. 121

Trigg, R. 211

Truswell, D. 65, 66

Trzepacz, P.T. 115

Tsang, S.W. 169

Tu, M.C. 245

Tulving, E. 305, 314

Turk, V. 75

Turner, D. 66

 

 

Udell, L. 74–5

UK Health Prevention Forum 34, 38

Um, M.Y. 134

Underwood, G. 315

Unison 195

United Nations (UN) 226, 258, 269, 274

University of Sheffield 294

US Courts 252

US Supreme Court 252

Uzzi, B. 204

Valcour, V.G. 69

Valentina, E. 197

Van Broeckhoven, C. 172

 

 

van de Ven-Vakhteeva, J. 329

Van Der Gaag, M. 142

van der Ham, K. 207

van der Lee, J. 139

van der Linde, R.M. 41

Van Dick, R. 346

Van Dijk, R. 346

van Duijn, C.M. 37

van El, C.G. 45

Van Gorp, B. 56

van Hoof, J. 206, 237

van Otterloo, A. 167

Vanhaverbeke, W. 334

Vardy, E. 122

Vedin, I. 172

Velilla, N.M. 116

Vellas, B. 35

Venturato, L. 82, 90

Vercruysse, T. 56

Verhey, F.R. 130, 142

Verity, C.M. 43

Vernooij-Dassen, M. 214

Vickrey, B.G. 352

Vileland, T. 33

Villars, H. 154

Visser, S.M. 365

Volicer, L. 245

Vollenberg, M. 207

von Strauss, E. 371

 

 

Waarde, H. 231

Wade, D.T. 138

Wagner, U. 311

Wais, P.E. 309

Walker, M.H. 141

Wallin, A. 249

Walsh, S. 102, 105–6

Walter, J.S. 184

Wang, H.X. 37, 371

Wang, Y. 39

Wanganeen, R. 64

Warchol-Biedermann, K. 362

Ward, G. 115

Ward, R. 185

Warren, J.D. 102, 104, 297

Warren, M.W. 40

Warrick, D.D. 165

Warrington, E.K. 315

Watchman, K. 74

Watson, G.S. 170

Watson, R. 173, 175

Watson-Wolfe, K. 334

Waugh, A. 352

Waugh, F. 238

Weatherhead, I. 173, 175

Webb, R.J. 184

Webber, M. 141, 142, 265

Weber, L.R. 140

Weiner, M.F. 40, 119

Weingarten, S.R. 212

Weinstein, J. 59

Weintraub, D. 280

Welch, I. 165

Wells, T.J. 182

Welsh, S. 246

Werner, P. 72, 103

Werner, S. 249, 251

Wessely, S. 52

West, D.G. 290

West, J. 334

West, M. 345, 351

Westendorp, R.G. 115

Westphal, A. 243

Whall, A.L. 132

Whalley, L. 105

Whear, R. 174

Wheeler, J.S. 184

Whelan, T. 200

Whitaker, R. 204, 325

White, C. 268

White, E.B. 245, 249

Whitehead, M. 228, 229

Whitehouse, P.J. 56

Whitlatch, C.J. 143, 251

Whitwell, J.L. 168

Wiersma, E. 132

Wight, M. 143

Wikberg, M. 185

Wilemon, D. 335

Wilken, J.P. 358

Wilkinson, C. 351

Wilkinson, H. 74, 75, 367

Wilkinson, R. 227

Wilks, S.E. 142

Willander, J. 316

Williams, B.W. 245

Williams, D.D.R. 106

Williams, K. 173, 175

Williams, R.S. 75

Williams, S. 151

Williamson, G.M. 142

Williamson, T. 58, 370

Willig, S. 298–9

Wills, T.A. 139

Wilson, J. 370

Wilson, P.D. 184

Wilson, R.C. 150

Wilson, S.J. 297

Wilson, S.N. 203, 204

Wimo, A. 82

Winblad, B. 130, 152, 197, 371

Wise, J. 27

Witlox, J. 115

Wittenberg, R. 69

Wolf Klein, G.P. 206

Wong, C.L. 114

Wong, F.K. 144

Woods, B. 200

Woods, R.T. 130, 306

World Health Organization (WHO) 41, 43, 53, 132, 226, 229, 356

Wortmann, M. 85

Wu, S.C. 175

Wyver, P.C. 130

 

Xiao, L.D. 137

Xu, W. 371

 

Yalla, S.V. 182

Yamaguchi, H. 141

Yamamoto, K. 247

Yang, C.T. 143

Yap, P. 181, 183

Year of Care Partnerships 215

Yonelinas, A.P. 314

Young, A. 315

Young, A.L. 371

Young, J.B. 116, 119

Young, K.W. 173

Young, R.S. 115

Yovel, G. 315–16

 

Zannas, A.S. 372

Zarit, J.M. 292

Zarit, S.H. 137

Zatorre, R.J. 295, 296, 297

Zecca, L. 40

Zeilig, H. 55

Zgola, J.M. 298

Zhan, L. 70

Zhong, S. 227

Zimmerman, S. 149

Zucker, L.G. 165

Zuidema, S

 

My talk on my new book at the Alzheimer’s Show (London Olympia) June 6th 2015

image001

Today, I was honoured to be invited to speak about my work on dementia in a session called “Meet the authors” at the Alzheimer’s Show here in London Olympia.

Thanks to Nigel Ward for organising this year’s programme, and to my co-presenters Marion and Maggie who presented their books on personal life experiences of caring in dementia. I strongly commend these books to you; “Have you seen my daughter?” and “The Gift of Alzheimer’s“.

co-authors

A recording of my talk is provided here. Thanks to Gary Marsh (@mistersquash) for recording it on an iPad; please note that the concourse of the exhibition is very noisy, so there is inenvitably a lot of background noise despite the excellent sound system.

I greatly admire Angela Rippon for promoting policy issues in dementia, but especially in inter-generational education of living with dementia.

CGz3wmDWQAAmMQE

This of course is a key policy plank in England and around the world; like ‘women and dementia’ (the 2015 report on this from Alzheimer’s Disease International was launched at the Alzheimer’s Show yesterday.)

Prelude

Any individual’s wellbeing is more than their interaction with health and care systems. Wellbeing is not simply an absence of ill being, and many factors are known to determine one’s health in the social strata such as housing and transport.

Many phenomena are not just physical buildings, such as hospices or care homes, and it is now being increasingly recognised that they act as community hubs in the wider community. It’s become ‘acceptable’ to celebrate very good care, and is in fact now being strongly encouraged in national policy to promote good practice. All too often boundaries can get established, creating distinct silos;  sharing is “king”, but secrecy can be fatal. Even regulators are taking on the mantle of trying to advance promote good care, as well as identifying when things have gone wrong.

It’s easy to unappreciate the potency of a number of different separate strands which have converged on the potential of ‘living better with dementia’. These include, for example, developments in the law, such as safeguarding under the Care Act to mitigate against neglect and abuse, initiatives to encourage ‘integrated care’ such as the ‘Better Care Fund’, the recent public health initiatives to increase knowledge about dementia in the public (“Dementia Friends“). Also, instruments in international law, such as the United Nationals Convention for People with Disability, have set the weather, in the way that, say, the Human Rights Act, possibly about to be repealed, might not.

But troublesome faultlines remain. For example, NHS spending is notionally being ringfenced, despite increasing ‘demand’ , but social care funding has not. The budget for Health Education England is substantially more than for Skills for Care, for example, reflecting different institutional priorities between professionals and practitioners perhaps.

When somebody receives a diagnosis, it’s invariably their friends and/or family who also deal with the diagnosis as a “team effort”. While the actual disclosure of dementia can be suboptimal, and here we need to be particularly mindful of success of people from different cultural backgrounds and with learning difficulties in obtaining a diagnosis, sometimes post-diagnostic support can be diabolical.

It might be a question of knocking on various doors, such as hospital services, or social care, but without proper care coordination, the system may present itself as a higgledy piggledy mess. Whilst research into better treatments is clearly for the benefit of society, we have to be realistic about we can achieve; we are unlikely to achieve ‘a cure for dementia’, in the same way that progress for the cancers, in treatments producing virtual remission, has been piecemeal across the years.

Progress is nonetheless being made, not least in identification of key issues. For example, people presenting with younger onset dementia often are testament to the notion that dementia’s not only about memories; some persons with ‘posterior cortical atrophy’ get driven round the houses seeing opticians for their complex visual problems, before seeing a cognitive specialist.

Above all in policy, we do need to learn from each other, and top of this must be the living experience of people living with dementia and those who find themselves in a caring rôle, often relatively underreported with little formal introduction from training. There’s been a lightbulb moment in policy, where it’s been OK to acknowledge that there’s space for all of us; for example, dementia advisers do different things to dementia support workers, or clinical specialist nurses. Not everything is clinical (indeed the policy drive has been to rely less on drugs where drugs are inappropriate). Different parties have different expectations, such as in the education and training of others, ability to enable and protect carers and people with dementia with coping strategies, or attention in specialist areas such as end of life.

A system oriented at wellbeing necessarily expects you should look at what people can do, rather than punish them for what they cannot do. I myself am now physically disabled, so the idea of reablement and rehabilitation is one I philosophically enrol to. And such an approach has to be joined up; and personalised. We all prefer have own clothing tastes, reflecting our experiences in the present and future. You’d never embark on making people all dress the same; so therefore an approach which totally disregards personhood is now totally unacceptable.

We’ve come a long way, but I can’t emphasise enough how I feel ‘experts by experience’ must be in the driving seat in service design, even including ‘new models of care’ and research priorities. These issues are not easy, often controversial, but I feel strongly we should not “shy away” of confronting them.

Remarks about this title

‘I congratulate Shibley on writing a book that brings together so many of the challenges facing people who are living with dementia, their families, and professionals from many different disciplines, and takes them forward in a critically thoughtful way. This is a book that truly points the way to a future where living better is a reality for everyone affected by dementia.’

– Beth Britton, Freelance Campaigner, Consultant, Writer and Blogger

(bethyb1886)

‘This new book is an immaculately researched guide to living with dementia in England in the 21st century, covering the subject from policy to lived experience, but always with consideration and compassion. There is no better introduction to the challenges and complexities that dementia brings to individuals, families and society.’

– Geoff Huggins, Director of Health and Social Care Integration, Scottish Government

(@GeoffHuggins)

‘This book is informative and challenging in equal measure. It not only provides a thorough analysis of the issues currently facing dementia care, but it also offers a refreshing and thoughtful critique of the many challenges. Each chapter carefully combines research evidence, practice issues and policy influences, and contextualises these within the experience of those living with dementia, including their carers. Whilst this book is complex and thought-provoking – I believe it is a highly welcome counterbalance to current thinking on how to improve the lives of all those who are affected by dementia. It will force the reader to challenge their own thinking about dementia, not just as an illness but as a social construct, and as such I would highly recommend it.’

– Rachel Thompson, Professional & Practice Development Lead for Admiral Nursing, Dementia UK

(@raheli01)

‘Shibley Rahman follows his first brilliant book on dementia with this fascinating publication, containing insight and empathy in equal measure. This book will help readers – health professionals and the public alike – to understand people in their lives with dementia, guiding you through everything you ever wanted to know about dementia and could possibly want to ask. Shibley guides you through the challenges of caring for people and living with dementia. He doesn’t shy away from the topics that are uncomfortable, but he also gives space to examples of good living and practice that leave the reader with hope and positivity.’

– Jenni Middleton, editor, Nursing Times

(@nursingtimesed)

‘I commend Shibley for this valuable addition to the current thinking and discussion on what it is to live with dementia. This text builds quite significantly on his original work and continues to challenge professionals on issues of importance for families affected by dementia. I find his frank and open style refreshing, unreserved in his willingness to question both the semantics used in practice and assumptions that are too easily made on what it might be like to live with dementia.’

– Karen Harrison-Dening, Senior Fellow at Institute of Mental Health, University of Nottingham

Other information

Living Better with Dementia: Good Practice and Innovation for the Future

Shibley Rahman (forewords by Kate Swaffer, Chris Roberts and Beth Britton)

 The Amazon page (yet to be fully updated) is here.

What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people living well with dementia?

Adopting a broad and inclusive approach, Dr Shibley Rahman evaluates critically existing dementia policy. He tackles head-on current and controversial challenges at the forefront of public and political discourse, such as leadership, access to services for marginalised groups, stigma and discrimination, integrated care, care and support networks, rights and budgets, personalised medicine and the use of GPS tracking. Drawing on a wealth of diverse research, with voices from around the world, he also identifies positive avenues for living better with dementia, such as creativity, and highlights pockets of innovation and good practice to inform practical solutions for the future.

Shibley Rahman graduated in neuroscience and medicine from Cambridge University. There he also completed his PhD in frontotemporal dementia, commencing a lifelong interest in the timely diagnosis of dementia. He also trained to postgraduate level in medicine, law and business. Shibley speaks regularly about dementia diagnosis and post-diagnostic care, researches wellbeing and advocates rights-based approaches.

ISBN 978 1 84905 600 7

Why I love my own research into living better with dementia

 

It more than nauseates me when I see undisclosed conflicts of interest. It makes me violently pissed off.

I don’t like it when Big Charity does not disclose that a document promoting early diagnosis of dementia, without calling for better resources for workforce training or post-diagnostic support, was sponsored by a drug company.

Conflicts of interest are not necessarily materially significant, but it is for members of the general public to judge. The Declaration of Helsinki makes it patently clear that negative results should be published as well as positive results.

There’s a fundamental problem with the case for screening for Alzheimer’s disease. Even if there were an inexpensive reliable test which is sensitive to early deficits in cognition in people with early Alzheimer’s disease, and that test is not sensitive to other medical conditions such as pure unipolar depression, the case for screening cannot stand.

This is due to two reasons. The track record of Big Pharma in finding a cure for Alzheimer’s Disease in the last two decades at least has been abysmal, whether you’re talking about symptomatic treatment or slowing of progression for a meaningful number for a meaningful time period.

Secondly, and equally significantly I feel, is that we simply don’t have money going into what living better with dementia might look like – where for example are trials into looking at GPS tracking systems for people with dementia, or for music improving quality of life?

I am in fact in the 1%, but not in the traditional general election sense. I am the “other” that does medical research.

Project update slides for PPI Working Group

I am regulated on the medical register, but do not get paid in any form for the research. And yet I have presented on my own at Alzheimer’s Europe and I am about to present at the Alzheimer’s Disease International conference in Perth later this month.

But there’s point in rubbishing what I do.

I have published one book ‘Living well with dementia’ last year, starvation in the midst of plenty bookwise, meaning that there are few evidence-based books on wellbeing in a climate where there’s no shortage of funds for research apparently.

I am about to publish another. Even  though I get no support in doing so, I actively promote research into dementia.

That was a half-truth, in fact.

I once got a free T shirt, and I actively promote research into dementia.

JDR-2

There are people in this country whose energy I could never match – such as Chris Roberts, Tommy Dunne, Agnes Houston, Tommy Whitelaw.

There are people abroad who are utterly amazing. I won’t embarrass them by naming them.

And frankly I couldn’t give a damn about people with long titles and important positions who proclaim themselves as ‘experts’ into dementia, whose self-righteousness I can spot a mile off.

It is not hyperbolic to say that this self-congratulation is to some extent justified by me having a huge return on investment – that is, my return on investment is astronomical given that I do not receive any grants.

Many people with dementia, and people closest to them, care about my research, and I care about that.

How to get tickets for the pre-launches celebration of our dementia books in Camden on 11 July 2015

Kate Swaffer (@KateSwaffer) and I, Dr Shibley Rahman (@legalaware), intend to do a joint book launch later this year.

Both books are being published by Jessica Kingsley Publishers later this year.

We request the pleasure of your company.

Tucked away in the heart of Camden Town, our hosts, the Arlington Centre, are known to be a very popular venue for community events like ours.

Details of the Arlington Centre are here.

The event will start at 2 pm on Saturday 11th July 2105.

The hashtag for the event is #KateShibBooks.

talk

Please note that this is the final and settled date and venue for this event. Thanks very much for your patience while we have been resolving this.

This event is strictly by invitation only – so we do request that you sign up in advance. We have tried to avoid this event clashing with the RCN Congress to be held in Bournemouth this year.

Attendance is, needless to say, completely free of charge.

Please sign up HERE – first come first served. 

 

 

light bulbs

 

Kate Swaffer (@KateSwaffer) and I, Dr Shibley Rahman (@legalaware), intend to do a joint book launch later this year.

Both books are being published by Jessica Kingsley Publishers later this year.

We request the pleasure of your company.

Please note that this is the final and settled date and venue for this event. Thanks very much for your patience while we have been resolving this.

There is, as such, no programme for this event; but attendance is by invitation only.

To request a ticket please sign up.

 

Please note that the last day for application for a ticket/tickets is June 27th; but the event will take place on July 11th 2015.

Refreshments will be available throughout.

We are in the very comfortable Arlington Centre which holds regularly such professional events.

 

The aim of this event is to launch two separate books by Kate Swafffer and Shibley Rahman.

 

It will be informal in approach. People from a diverse range of backgrounds have expressed an interest to attend, and this will be reflected on the day when guests will be encouraged to introduce themselves to one another.

 

While the programme is flexible, the afternoon will have two complementary prongs of attack.

 

One will be to establish the ‘macro’ environment of dementia policy around the world, as discussed in Shibley’s new book (currently schedule for July 21st 2015 publication date).

 

The other one is a personal experience of life by Kate Swaffer. Kate’s book is wideranging, including a life expereince after receiving a diagnosis of dementia, but will reflect Kate’s much wider knowledge and other interests too.

 

We are hopeful that ‘highlights’ may include contributions by Dr Richard Taylor, a world ‘champion’ in issues to do with dementia living with dementia and who has written a Foreword to Kate’s book; and Chris Roberts, a ‘Dementia Friends Champion’, ambassador and who has written a Foreword to Shibley’s book. 

 

Also, Kate herself will be doing selected readings from her book (details below). This, I anticipate, will be a popular focus of the afternoon.

Please let Shibley (srahman@doctors.org.uk) know of any special requests for this afternoon, and they will be considered by both Kate and Shibley. 

 

 

best wishes, shibley

 

6 April 2015

 

Notes:

 

Kate’s book is called, “What the hell happened to my brain?

Details are here.

Information about this book:

“Kate Swaffer was 49 years old when she was diagnosed with a rare form of young onset dementia. Here, she insightfully explores issues relating to that experience, such as giving up employment and driving, breaking the news to family, having a suddenly reduced social circle, stigma surrounding dementia and inadequacies in care and support. Kate also shares her experiences in dementia activism and advocacy, highlighting the important role of social media in combatting isolation post-diagnosis. Kate’s empowering words will challenge preconceptions on dementia, highlight the issues that impact individuals living with a dementia diagnosis, and act as a source of comfort for them and their loved ones. The book will also be of interest to dementia care professionals.”

Shibley’s book is called “Living better with dementia: looking forward to the future“, as a follow-up to his irst book “Living well with the dementia: the importance of the person and the environment” which was received with critical acclaim.

Details are here.

Information about this book:

What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people living well with dementia? Adopting a broad and inclusive approach, Shibley Rahman presents a thorough critical analysis of existing dementia policy, and tackles head-on current and controversial topics at the forefront of public and political debate, such as diagnosis in primary care, access to services for marginalised groups, stigma and discrimination, integrated care, personal health budgets, personalised medicine and the use of GPS tracking. Drawing on a wealth of diverse research, and including voices from all reaches of the globe, he identifies current policy challenges for living well with dementia, and highlights pockets of innovation and good practice to inform practical solutions for living better with dementia in the future. A unique and cohesive account of where dementia care practice and policy needs to head, and why, and how this can be achieved, this is crucial reading for dementia care professionals, service commissioners, public health officials and policy makers, as well as academics and students in these fields.”

Kate and Shibley have decided to make a limited number of tickets for this free event for this book launch available to all, but the event is generally by invitation only.

If you’d like you to be considered for one of these limited number of tickets, please do let us know.

Thanks and best wishes!

 

Contents to my new book ‘Living better with dementia: Good practice and innovation for the future’

 

image002-2

Please note that this may or may not be the final book cover.

My new book ‘Living better with dementia: good practice and innovation for the future’ will be published by Jessica Kingsley Publishers on July 21st 2015.

The information about the book is here.

This is the official ‘blurb’.

What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people living well with dementia? Adopting a broad and inclusive approach, Shibley Rahman presents a thorough critical analysis of existing dementia policy, and tackles head-on current and controversial topics at the forefront of public and political debate, such as diagnosis in primary care, access to services for marginalised groups, stigma and discrimination, integrated care, personal health budgets, personalised medicine and the use of GPS tracking. Drawing on a wealth of diverse research, and including voices from all reaches of the globe, he identifies current policy challenges for living well with dementia, and highlights pockets of innovation and good practice to inform practical solutions for living better with dementia in the future. A unique and cohesive account of where dementia care practice and policy needs to head, and why, and how this can be achieved, this is crucial reading for dementia care professionals, service commissioners, public health officials and policy makers, as well as academics and students in these fields.

I can exclusively reveal the contents as below.

Acknowledgements

I am honoured that Kate Swaffer, Chris Roberts and Beth Britton have written the Forewords to my book: you can read them here.

This is my follow-up to my book ‘Living well with dementia: the importance of the person and the environment‘.

I should like to admit that I think ‘Living well’ is the wrong term. It potentially sets people up for a fall, if they cannot achieve someone else’s external standards for wellbeing. This is wrong. An aspiration for all people to live better, I feel, instead is a reasonable one.

 

 

Forewords for my new book

Foreword by Kate Swaffer, Chair Dementia Alliance International (@KateSwaffer)

Kate

It is my great honour and a real privilege to have been asked to write a Foreword for this very important book. When reading Shibley’s previous book, the first part of the title Living Well With Dementia initially irked me very slightly, as I knew he personally was not living with dementia. However, as I have come to know this gentle man, who is now a close friend, as well as a colleague and an academic in the field of dementia, I fully believe he was right to use that title.

That book, and this latest one are all about teaching others, including doctors and health care professionals, to empower and teach people like me, people who are diagnosed and living with dementia, to live well. It is also a book for people living with dementia and family carers, highly accessible, in spite of the narrative coming from a very impressive evidence based perspective.

This book, like the last one, is highly relevant and highly readable. We have, I believe, taught each other a great deal about dementia.

One might wonder why do we need to teach others it is possible to live well with dementia. From my personal experience and perspective, the current post diagnostic support begins with Prescribed Disengagement™, which supports aged care and dying, rather than living.

Shibley is one of the few health care professionals and academics who believes passionately this is not only possible, it is necessary for us to be treated with autonomy and without stigma. It is urgently required if the escalating number of new diagnosis of dementia is to be believed. He is often willing to speak up for things outside of the boundaries of what perhaps his colleagues or others might think are current practice; his deep concerns for the value of individuals, and his desire to support us [people with dementia] to live well, resonates throughout this book.

The over riding messages about living well, of our most basic of human rights, and of the legal perspectives relating to the treatment and care of people with disabilities, which includes people with dementia, recognises us as full and equal human beings as every other group of people. It instructs and teaches from a rights based perspective, with humanity and a deep and sincere interest in the well being of the person.

Whilst some might see it as a medical book, it does not medicalise the support of people with dementia. The discussions on autonomy, discrimination, prejudice, citizenship and stigma must be absorbed, not just read, and in the context of equality and living not just well, but living better with dementia.

He quotes me in chapter 5, “it is time all people with dementia and their families stood up for better advice and services that enhance well being”. It is my firm belief that this book does a great job towards achieving that. Alzheimer’s Disease International has a charter; I can live well with dementia. Dr Rahman is one of the very few who not only believes this is possible, but has chosen, quite often, to go against the tide and speak up for it. Thank you Shibley.

Kate Swaffer
Co-chair and co-founder, Dementia Alliance International
Chair, Alzheimer’s Australia Dementia Advisory Committee
Co-chair, Alzheimer’s Australia Consumer’s Dementia Research NetworkForeword by Chris Roberts, Dementia Alliance International, Dementia Friend Champion

http://kateswaffer.com

 

Foreword by Chris Roberts, living well with dementia, Dementia Friends Champion, Board member of Dementia Alliance International (@mason4233)

Chris Roberts

There are a lot of books out there on dementia but none as informative as this one.

It is an excellent follow on from Dr Rahman’s first book “Living well with dementia”. I read his first which we found a considerable help especially I have mixed dementia.

After reading it I had a thirst for more knowledge about the dementias and how I could live better.

This book has just done that!

It goes into great detail, using his academic knowledge and using the experiences of other caregivers.

More importantly he has used the experience of people who are living with dementia to explore different therapies and self help to achieve this.

It explores disability rights, dementia friendly communities, and even advocacy. It talks about some subjects hardly ever touched before. It’s a great guide for anyone exploring dementia for whatever reason bringing about discussions as well as factual information.

It is possible to ‘live better with dementia’ using this book as a reference to answer questions as to what is to come and how you can be involved in your own destiny.

I highly recommend this book as a great starting point on your journey after your diagnosis, aimed at those with a dementia, caregivers, families and for professionals – and for care homes.

It reminds us that there is a beginning and a middle before the end and, using every resource to hand, once you have read this book and explored therapies out there, you can live well and better with dementia.

I would like to thank Dr Rahman for bringing about such a useful book and for being a very good friend to my wife and me.

Chris Roberts, aged 53
Living well and better with dementia.
Rhuddlan, Wales
December 2014

https://mason4233.wordpress.com

FOREWORD TO ‘Living better with dementia: looking to the future’ by Beth Britton, Freelance Campaigner, Consultant, Writer and Blogger (@bethyb1886)

beth

It is an exceptionally difficult task to write a foreword that could add anything more to a book that is already packed full of the very best in ideas, examples and articulation of the essence of living better with dementia. The title is particularly apt, and I applaud Shibley for reasoning that the concept of ‘living better’ has an inclusivity about it that reflects some of the immense difficulties many people who are living with dementia, and their families, are going through.

I feel passionately that this book has huge potential to provide hope to people who are living with dementia and their families – hope, that alongside love, helped to sustain me and my family during my father’s nineteen years with vascular dementia, a period of time that included my teens and twenties. Having gone ten years without a diagnosis, the last nine years of my father’s life were spent in three different care homes before he passed away in April 2012, aged 85. My hope now is that his memory lives on through my work as a campaigner, consultant, writer and blogger.

During those nineteen years we faced some extremely traumatic times as a family. The stroke that left my father collapsed at home, the aftermath of his diagnosis and the search for care homes, alongside variable standards of health and social care, and my father battling with critical chest and urinary tract infections all had aspects of heartbreak and challenge about them.

Yet in the midst of great sadness and difficulty we unexpectedly found even more joy – indeed, sharing some of the positives from our experiences was my inspiration for beginning my D4Dementia blog which has subsequently led onto all the work I do now. Within this book, Shibley has devoted key chapters to some of the most important elements that enabled my father to live better, namely:

  • Food and eating. For many years, with no teeth and eventually having to cope with dysphagia, my father had the best appetite in his care home.
  • Art and creativity, which enhanced my father’s life immeasurably and proved to be far more effective than medications.
  • Reminiscence and sport, both of which played a significant part in helping us remain connected with my father as a family through to the end of his life.

Vitally, I feel, Shibley also tackles some of the more taboo topics around dementia, most notably incontinence. My father became doubly incontinent in the aftermath of his largest stroke (the stroke that led to his diagnosis of vascular dementia), and lived with that incontinence throughout his nine years in care homes. For the person themselves, their carer(s) and family, shining a light on this difficult topic can only help to improve care and support.

I am also heartened to see Shibley including a chapter on ‘wandering’ and widening this out to look at the debates around GPS systems. My father was labelled a ‘wanderer’ just because he wanted and needed to walk, this despite the fact that in his earlier years he had led an active outdoor life as a farmer. Only when he was diagnosed with dementia did his life-long love of walking suddenly become labelled as ‘wandering’, something I felt was hugely disrespectful.

The need for dignity and respect runs throughout my work, and never more so than when highlighting the need for diagnosis to go hand-in-hand with appropriate, personalised post-diagnostic support that gives the person with dementia and their family the very best chance of living better with dementia. With this in mind, I am delighted that the largest chapter in this book is devoted to care and support networks, a topic that I know Shibley is very passionate about.

I congratulate Shibley on writing a book that brings together so many of the challenges facing people who are living with dementia, their families, and professionals from many different disciplines, and takes them forward in a critically thoughtful way. This is a book that truly points the way to a future where living better is a reality for everyone affected by dementia.

www.bethbritton.com
February 2015

Personalised medicine, genetics and Big Data: the “New Jerusalem” for dementia?

The fact that there are real individuals at the heart of a policy strand summarised as ‘young onset dementia’ is all too easily forgotten, especially by people who prefer to construct “policy by spreadsheet”.

It is relatively uncommon for a dementia to be down to a single gene, but it can happen. And certainly, even if there might not be ‘cure’ for today or tomorrow, identification of precise genetic abnormalities might provide scope for genetic counseling. Markus (2012) argues that many monogenic forms of stroke are untreatable, and therefore, specialised genetic counseling is important before mutation testing. This could be particularly important in asymptomatic individuals, or those with mild disease; for example, potential cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL) patients who have migraine but have not yet developed stroke or dementia. Mackenzie and colleagues (Mackenzie et al., 2006) published on a group of families with a clinical diagnosis of tau-negative, ubiquitin-immunoreactive neuronal inclusions (NII). The authors discussed how findings across the literature appeared to suggest that, in this particular condition, NII are a highly sensitive pathological marker for progranulin genetic mutations and their demonstration may be a way of identifying cases and families that should undergo genetic screening.

But is this genomics revolution the beginning of a “New Jerusalem” in dementia, beyond the headlines?

“Big data” refers to information that is too large, varied, or high-speed for traditional methods of storage, processing, and analytics. For example, one application of mining large datasets that has been particularly productive in the research community is the search for genome-wide associations (“Genome-Wide Association Studies (“GWAS”)). GWAS rely on analysis of DNA segments across vast patient populations to search for DNA variants associated with a particular disease. To date, GWAS analyses have identified a handful of promising genetic associations with Alzheimer’s disease, including Apo E4.

This is clearly wonderful if “money does grow on trees”, but the concern for initiatives such as these such work is resource-intensive, and diverts resources from frontline improvements in wellbeing of people living with dementia. Investors also have to be mindful of their financial return compared to the risk of such initiatives. One of the biggest complaints of proponents of “Big Data” is that data tend to be pocketed in a fragmented, piecemeal fashion.

As the McKinsey Centre for Business Technology (2012) state in an interesting document called, “Perspectives on digital business”:

 “The US health care sector is dotted by many small companies and individual physicians’ practices. Large hospital chains, national insurers, and drug manufactuers, by contrast, stand to gain substantially through the pooling and more effective analysis of data.”

Vast collections of genomic data obviously represent a goldmine for health providers around the world. Meltzer (2013) reviews correctly that personalized medicine been the subject of increased basic and clinical research interest and funding. Meltzer describes that a knowledge of the genetic and molecular basis of clinical heterogeneity should make it possible to more reliably predict the likely outcomes of alternative approaches to treatment for specific individuals and therefore what course of action is likely to be best for any given patient. Knowledge of personal genetic traits might allow accurate prediction of those invididuals who are most likely to experience adverse events through medication (Markus, 2012).

Both ‘Big Data’ and ‘personalised medicine’, in being couched language of bringing value to operational processes in corporate strategy, tend to lose the precise cost-effectiveness arguments at an accounting level. The new CEO of NHS England, Simon Stevens, will have raised eyebrows with the Guardian piece entitled, “New NHS boss: service must become world leader in personalised medicine” from 4 June 2014 in “The Guardian” newspaper (Campbell, 2014) . Whether the National Health Service of the UK can cope with this, with inevitable transfer of funds from the public funds to private funds, with all the talk of ‘sustainability’, is a different matter. It is difficult to predict what the uptake of personalised medicines will be, even if every patient has access to his or her personal genomic sequence in years to come. All jurisdictions have to consider whether they can justify the sharing of information for public interest overcoming concerns about data privacy and security, and ultimately this is a question of legal proportionality.

The pitch from corporate investors tend to minimise biological practicalities too. For example, it is still yet to be determined what the precise interplay between genetic and environmental factors are, particularly for the young onset dementias. And the assumption that all ‘big’ data are ‘good’ data could be a fallacy. There are 1000 billion neurones in the human brain, and it is well known that not all neuronal connections between them are ‘productive’; in fact a sizeable number are redundant. Heterogeneity in genetic sequences might be meaningful, or utterly spurious, and it could be a costly experiment to wait to find out how, when there are more pressing considerations about both care and cure.

But is this genomics revolution the beginning of a “New Jerusalem” in dementia, beyond the headlines?

Frontotemporal lobar degeneration (FTLD) is the second most common cause of dementia in individuals younger than 65 years (Ratnavilli et al., 2002). It is a progressive neurodegenerative disorder characteristically defined by behavioural changes, executive dysfunction and language deficits. The behavioural variant of FTLD is characterised in its earliest stages by a progressive, insidious change in behaviour and personality, considered to reflect underlying problems in the ventromedial prefrontal cortex (Rahman et al., 1999). FTLD has a strong genetic background, as supported by positive family history in up to 40% of cases, higher than what reported in other neurodegenerative disorders and by the identification of causative genes related to the disease (Seelaar et al., 2011). The notion that genetic background might affect disease outcomes and rate of survival, modulating the onset and the progression of the pathological process when disease is overt (Premi et al., 2012). Given the consolidated role of genetic loading in FTLD, the likely effect of environment has almost been neglected.

Only recently, it has been reported that modifiable factors, i.e. education and occupation, might act as proxies for reserve capacity in FTLD. Patients with a high level of education and occupation can recruit an alternative neural network to cope better with cognitive functions (e.g. Borroni et al., 2009; Spreng et al., 2011). But the search for treatments for particular types of dementia based on their underlying genes and genetic products is arguably not an unreasonable one. A good example is provided by the Horizon Scanning Centre of the National Institute for Health Research of NHS England in September 2013 (NIHR HSC ID: 8239): leuco-methylthioninium, which is a “tau protein aggregation inhibitor”. It acts by preventing the formation and spread of neurofibrillary tangles, which consist of aberrant tau protein clusters that aggregate within neurons causing toxicity and neuronal cell death in the brain of patients with certain forms of dementia. Leuco-methylthioninium is a stabilised, reduced form of charged methylthioninium chloride. The clinical trials for this are under way. The medication at the time of writing may or may not work safely.

No. This genomics revolution the beginning of a “New Jerusalem” in dementia, especially when social care is on its knees.

 

References 

Borroni B, Premi E, Agosti C, Alberici A, Garibotto V, Bellelli G, Paghera B, Lucchini S, Giubbini R, Perani D, Padovani A. (2009) Revisiting brain reserve hypothesis in frontotemporal dementia: evidence from a brain perfusion study. Dement Geriatr Cogn Disord, 28, pp. 130–135

Campbell, D. (2014) New NHS boss: service must become world leader in personalised medicine, The Guardian, 4 June. http://www.theguardian.com/society/2014/jun/04/nhs-boss-world-leader-personalised-medicine.

Mackenzie, I.R., Baker, M., Pickering-Brown, S., Hsiung, G.Y., Lindholm, C., Dwosh, E., Gass, J., Cannon, A., Rademakers, R., Hutton, M., Feldman, H.H. (2006) The neuropathology of frontotemporal lobar degeneration caused by mutations in the progranulin gene, Brain, 129(Pt 11), pp. 3081-90.

Mendez, M. (2006) The accurate diagnosis of early-onset dementia. Int J Psychiatry Med, 36(4), pp. 401– 12.

McKinsey Centre for Business Technology (2012) Perspectives on digital business.

Rahman, S., Sahakian, B.J., Hodges, J.R., Rogers, R.D., Robbins, T.W. (1999) Specific cognitive deficits in mild frontal variant frontotemporal dementia, 122 (Pt 8), pp. 1469-93.

Ratnavalli E, Brayne C, Dawson K, Hodges JR. (2002) The prevalence of frontotemporal dementia. Neurology, 58(11), pp. 1615-1621.

Spreng, R.N., Drzezga, A., Diehl-Schmid, J., Kurz, A., Levine, B., Perneczky, R. (2011) Relationship between occupation attributes and brain metabolism in frontotemporal dementia,  Neuropsychologia, 49, pp. 3699–3703.

The Dementia Alliance International is not a convenient marketing tool for dementia salesmen

The following is the draft of an extract from my chapter “Stigma, citizenship and living better with dementia” in “Living better with dementia: how champions can break down the barriers”, by Shibley Rahman with Forewords by Prof Alistair Burns, Kate Swaffer and Chris Roberts.

 

The really important question therefore is: how can people living with dementia lead? A really important steer for this came from the Joseph Rowntree Foundation in a report by Toby Williamson called “A stronger collective voice for people with dementia” (October 2012). The Dementia Engagement and Empowerment Project (DEEP) was a project which aimed to explore, support, promote and celebrate groups and projects led by or actively involving people with dementia across the UK that were influencing services and policies, affecting the lives of people with dementia. DEEP was a one year project which finished in Summer 2012. One of their key recommendations was that national and local organisations providing services or working with people with dementia need to develop and implement involvement plans, allocating resources to develop new groups, link groups together and help them share resources. Furthermore, it was recommended that researchers and research networks need to involve groups of people with dementia in helping to identify research topics, advise on research findings and undertake research on topics identified as important by people with dementia. Thankfully, this work has now been extended as part of the Joseph Rowntree Foundation’s work “Dementia Without Walls”, with various stakeholders also involved.

Ruth Bartlett erself found that keeping a diary has the potential to be used much more widely in patients living with dementia. In her opinion, the main advantage of this method is that unlike interviews, the diarist, rather than the researcher, is ultimately in control of how and when data are collected (e.g. Bartlett, 2011). Bartlett argues that diaries encourage participants to record thoughts and feelings as and when they occur and wherever they feel most comfortable; it therefore has the potential to compensate for short-term memory problems associated with dementia, plus it could help to minimise ‘respondent burden’ traditionally associated with interview based studies involving people with dementia (Cottrell and Schulz, 1993, p. 209). Bartlett has further suggested that people living well with dementia are willing, able to campaign, and presenting this at national and international conferences.

Dementia Alliance International (DAI) is the first global group, of, by and for people with dementia, where membership is comprised exclusively of people with dementia. Dementia Advocacy and Support Network International (DASNI) was the first organisation set up in 2001 by people with dementia; however their membership was not exclusive to people with dementia. There subsequently saw a sprinkling of groups at national levels, the Scottish Dementia Working Group (2002), the European Dementia Working Group (2012) and the Australian Dementia Working Committee (2013) were set up with membership of people with dementia, supported by their national Alzheimer’s organisations.

DAI was therefore established in January 2014 to promote education and awareness about dementia, in order to eradicate stigma and discrimination, and to improve the quality of the lives of people with dementia. DAI advocates for the voice and needs of people with dementia, and provides a global forum, aiming to unite all people with dementia around the world to stand up and speak out.

In the last few years, the voices of people with dementia around the world have become stronger, with leaders including Richard Taylor, Janet Pitts and Kate Swaffer. More recently a number of people with dementia have been discussing things globally, finally giving birth to DAI, to ensure issues such as social isolation, discrimination, stigma and exclusion are addressed. Their members wished to build a group consolidating the vast global networks of people with dementia now speaking and collaborating with each other over the Internet through blogs, Twitter, Pinterest, Facebook and other social media. The modern internet now offers incredible opportunities for organising social movements. too large or too difficult for a single person to undertake. In typical crowdsourcing applications, large numbers of people add to the global value of content, measurements, or solutions by individually making small contributions. Such a system can succeed if it attracts a large enough group of motivated participants,such as Wikipedia, Flickr and YouTube. These successful crowdsourcing systems have a broad enough appeal to attract a large community of contributors, giving true credibility to the idea that the whole is more than the sum of its constituent parts. And initial experience of people living well with dementia and the social media has led to interest in a related activity called ‘friendsourcing’. Friendsourcing attempts to synthesise social information in a social context: it is the “use of motivations and incentives over a user’s social network to collect information or produce a desired outcome, using as a guide what members of the network themselves consider to be important” (Bernstein et al., 2010).

But the notion that dementia is a cognitive or behavioural disability puts the debate into an altogether different stratosphere. Instead of aspirational ‘dementia friendly communities’, a title which itself is open to abuse by politicians, other leaders and charities, the narrative then becomes treating persons with dementia for whom policies cannot serve to their detriment. That is unlawful, under indirect discrimination in various legal jurisdictions. That is therefore an enforceable right. But why is there a feeling that things have not improved much despite various global initiatives.

Batsch and Mittleman (2012) in their ADI World Alzheimer Report, “Overcoming the stigma of dementia” remark that:

 “Government and non-government organisations in some countries have
been working tirelessly to pass laws aimed at eliminating discriminatory practices such as making people with dementia eligible for disability schemes. Regional organisations within countries have worked with local governments to improve access to services and delay entry to residential care, most of the time by trying to reduce stigma amongst family carers and health and social service professionals through increased education and regulations.”

Beard and colleagues (2009) offer practical suggestions for how a volte face in thinking could come about:

 “Study participants reported various ‘rough spots’ along the path of dementia and their strategies for circumventing them. There were personal, interactional, and environmental factors that caused them difficulties. Strategies included concrete activities, emotional responses, and environmental adaptations. Respondents used cognitive aids, made various modifications, garnered assistance from others, and practiced ‘acceptance’ to deal with persistent problems. Barriers resulted from the disease itself as well as personal obstacles and pressures from others. Participants clearly demonstrated that their lives were meaningful and could be further enriched through advocacy, a positive attitude, and physical, mental, and social engagement. These data show persons with dementia performing the emotional work of illness management, incorporating related contingencies into everyday life, and reframing their own biographies. As they creatively adapted and constructed meaning, order, and selves that were valued, respondents demonstrated agency by actively accommodating dementia into their lives rather than allowing it to be imposed upon them by structural forces.”

The highly intriguing aspect now is that even the narrative of ‘involvement’ is being reframed. This was indeed warned about by Beresford (2002) who suggested service user involvement has emerged out of two different rationales for participation – one consumerist, the other democratic. The former claims that greater efficiency, efficacy and effectiveness will result from appropriately-placed service user feedback mechanisms. The latter, democratic approach, often framed in a rights discourse, views user participation as a form of self advocacy. The history of mental health activism can be dated far further back, to 1620, when inmates at the Bedlam asylum petitioned for their rights (Weinstein, 2010). That the DAI finds itself having attracted the attention of large charities, Big Pharma and social enterprises promoting living well with dementia is not altogether surprising therefore, even despite its relatively young existence.

References 

Bartlett, R. (November 2011) Realities Toolkit #18: Using diaries in research with people with dementia.

Batsch, N. L., Mittelman, M. S. (2012) World Alzheimer’s report. Overcoming the stigma of dementia. Executive summary. London, UK: Alzheimer’s Disease International.

Beresford, P. (2002) ‘User Involvement in Research and Evaluation: Liberation or Regulation? Social Policy & Society, vol. 1(2), pp. 95-105.

Cottrell, V., Shulz, R. (1993) The perspective of the patient with Alzheimer’s disease: A neglected dimension of dementia research, The Gerontologist, 33 (2), 205-211.

Weinstein, J. (2010) Mental Health, Service User Involvement and Recovery, London: Jessica Kingsley.

Lots of small gains will see our shared vision for living better with dementia shine through

When I asked Charmaine Hardy (@charbhardy) if she would mind if I could dedicate my next book, ‘Living better with dementia’ to her, I was actually petrified.

Obviously, Charmaine had every right to say ‘no’. You see, I met Charmaine through Beth on Twitter, and I saw the three letters ‘PPA’ in Charmaine’s Twitter profile. Charmaine’s Twitter timeline is simply buzzing with activity. It’s hard not to fall in love with Charmaine’s focused devotion everywhere, nor with how much she adores her family. This passion, despite daily Charmaine working extremely hard, itself generates energy. People are attracted to Charmaine, as she never complains however tough times get. She thinks of ways to go forwards, not backwards, even when she had trouble with her roses recently. She basically creates a lot of good energy for all of us. As Charmaine’s Twitter profile clearly states, “I’m a carer to a husband with PPA dementia.”

Things are not right with the external world though. We have millions of family unpaid caregivers rushing around all the time, trying to do their best. Seeing these relationships in action, as indeed Rachel Niblock and Louise Langham must do at the Dementia Carers’ Call to Action (@DAACarers), must be a fascinating experience. There’s a real sense of shared purpose, often sadly against the “system”.

Contrary to popular opinion, perhaps, I have a strong respect for the hierarchy I find myself in. I have asked Prof Alistair Burns (@ABurns1907), a very senior academic in old age psychiatry, to write one of my Forewords. He also happens to be England’s lead for dementia, but I hope to produce my book as a work of balanced scholarship, which does not tread on any policy toes.

But underlying my book is a highly energised social network (@legalaware), based on my 14000 followers on Twitter. My timeline is curation of knowledge in action, in real time as my #tweep community actively share knowledge on a second-by-second basis. There’s a real change of us breaking down the barriers, and changing things for the better. Sure, some things of course don’t go to plan, but with innovation you’re allowed to crack a few eggs to make an omelette. I have enormous pleasure in that in this network people on the whole feel connected and with this power might produce a big change for the better.

My new book is indeed called ‘Living better with dementia: champions challenging the boundaries‘ – and I feel Kate Swaffer (@KateSwaffer) and Chris Roberts (@mason4233) are doing just that. They continually explain, reasonably and pleasantly, how the system could be much improved from their perspectives of living well with dementia, such that we could end up with a ‘level playing field’. And of course the fact we know what each is up to, for example pub quizzes or plane flights, means that we end up being incredibly proud even if we have the smallest of wins.

My proposed contents of this book are as follows: here.

I am not going to write a single-silo book on living better with dementia, however much the medics would like that.

For many of us in the network, dementia is not a ‘day job’. This shared vision is not about creating havoc. It’s simply that we wish the days of the giving the diagnosis of dementia as ‘It’s bad news. it’s dementia. See you in six months’, as outnumbered. That’s as far as the destruction goes. We want to work with people, many of whom I used to know quite well a decade ago, who felt it was ‘job done’ when you diagnosed successfully one of the dementias from seeing the army of test results. I would like the medics and other professionals not to kill themselves over our urge for change, and work with us who believe in what we’re doing too.

Whenever I chat with Kate and Chris, often with a GPS tracker myself in the form of Facebook chat, I am struck by their strong sense of equity, fairness and justice. And I get this from Charmaine too. The issue for us is not wholly and solely focused on how a particular drug might revolutionise someone’s life with dementia. The call for action is to acknowledge friends and families need full help too, and that people living with dementia wish to get the best out of what they can do (rather than what they cannot do) being content with themselves and their environment. We’re looking at different things, but I feel it’s the right time to explain clearly the compelling message we believe in now.

These values of course take us to an emotional place, but one which leads us to want to do something about it. For me, it’s a big project writing a massive book on the various contemporary policy strands, but one where I’ve had much encouragement from various close friends. For me, the National Health Service kept me alive in a six week coma, taught me how to walk and talk again, when I contracted meningitis in 2007. As I am physically disabled, and as my own Ph.D. was discovering an innovative way of diagnosing a type of frontotemporal dementia at Cambridge in the late 1990s, I have a strong sense of wishing to support people living with dementia; especially since, I suspect, many of my friends living well with dementia will have experienced stigma and discrimination at some time in their lives.

I understand why medics of all ranks will find it easier to deal with what they are used to – the prescription pad – in the context of dementia. But I do also know that many professionals, despite some politicians and some of the public press, are excellent at communicating with people, so will want to improve the quality of lives of people who’ve received a diagnosis. We need to listen and understand their needs, and build a new system – including the service and research – around them. I personally ‘wouldn’t start from here’, but this sadly can be said for much for my life. Every tweet on dementia is a small but important gain for me in the meantime. Each and every one of us have to think, ultimately, what we’ve tried to do successfully with our lives.

Suggested reading

Read anything you can by @HelenBevan, the Chief Transformation Officer for the NHS.

Her work will put this blogpost in the context of NHS ‘change’.

“Leadership is the art of mobilizing others to want to struggle for shared aspirations.”

“McLaughlin: Leadership has so many definitions that sometimes that term loses its meaning. How do you define it?

Kouzes: Leadership is the art of mobilizing others to want to struggle for shared aspirations. That part about struggling for shared aspirations may set our definition apart.”

I’ve also been though the motions of detailed study of leadership styles in my own MBA.

But this definition of James Kouzes really struck a chord with me.

This is of course not a particularly impressive ‘leadership style’, one sedentary guy with an iPad mini with a large product placement in shot?

shibley pic

I have fleetingly thought too about who is the exact target audience of my book.

While ‘Living well with dementia’ is not a ‘self help book’, it is a fact that many people living well with dementia have warmly received the book.

In fact, in the front row in my line of vision to the left, two people sat, a son and his mother with dementia.

It turns out the son found my talk ‘inspiring’, and thanked me, in front of his mother, for saying which he perceived as powerful: that it’s more important to concentrate on what people can do in the present, rather than they cannot do.

And what did I conclude was the driving intention of an international policy plank about living well with dementia?

I concluded that a positive wellbeing is about a person being content with himself or herself, and his or her own environment.

This is not an issue of being drugged up with a ‘cure for dementia’. It is though saying something equally positive about dementia, if not more positive.

I do not consider the Alzheimer’s Show an “event with a buzz”. For me, it was like a wedding of a best friend. I was thrilled to meet Chris, Jayne, Suzy, Rachel, Louise, Natasha, Joyce, Nigel, Tracey, Tony, and Tommy, some for the first time.

And what you see is what you get with them.

Chris concluded, “Living better with dementia would’ve been a better title.”

And Tommy agreed.

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Chris and Tommy live well with dementia.

I agreed too. In a nutshell, ‘living well with dementia’ runs the danger of imposing your moral judgment or ‘standards’ on what living well with dementia is.

For me, living well in alcoholic recovery means not downing a bottle of neat gin when I get up, like I used to do in late 2006/early 2007 when I hit a rock bottom. (The actual rock bottom was when I had a cardiac arrest and epileptic seizure heralding a six week coma in the summer of 2007, rendering me physically disabled.)

But it’s a big thing for me that people who are living well with dementia are actually interested in – and supportive of – my book.

You see, I concede that I don’t live with a dementia yet to my knowledge – though many London cabbies conclude that I do [nicely], when I tell them the title of my book and they see me struggling get into their cab.

Chris pointed out something at first glance very true today – that I didn’t have many friends living with dementia as friends then, when I was writing my book.

Chris is in fact wrong. “Any” not “many”.

Tommy said something curious recently, that it’s ironic that it took an event such as the Alzheimer’s Show in Manchester to bring us all together.

But he’s right. We’re not there for any other reason than to share experiences.

Suzy commented that ‘I get it’. And I do think do, for all sorts of reasons, many of which were quite unintended.

I am currently writing ‘Living better with dementia: champions challenging the boundaries”. It’s going to be a toughie, but I think I can do it.

 

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If only Kate were there too…